Ode To The Hitch

FeaturedOde To The Hitch

NSCLC

Friday, February 17, 2012

I started this blog at the beginning of a fairly traumatic and fatalistic journey which would explain the opening line I first wrote: “And so to journal the end, which is nigh, it seems.”

Well, whilst that statement could be construed as true in just about any circumstances, on a personal level I feel now that it gives the reader a less than perfect impression of what follows so I’m going to offer the following alternative beginning so as not to hide the good news that my friend will want to hear. Most of this was written almost live, just after it happened or even as it was happening, some was added after to fill in gaps, so on occasion the context might appear not to quite fit and the construction definitely leaves room for improvement:

And so to journal what could so very easily have been the end, which is not quite as nigh as I at first thought, it seems.

I’m not sure quite what I expected when I decided to go (finally) and ask for an investigation into what I was already sure was that dreaded beast, the cancer. Admittedly, I feared it was the same as dear Christopher’s, (Hitchens) the esophageal kind. For once the doc appears to have been correct in casting aside my self-diagnosis, proffering the much more likely (and somewhat inane) alternative of the lung kind and writing me up for the low tech scan of the x-ray kind.

It wasn’t fear that caused me to delay getting my ass to the hospital, any more than it had been the cause of the twelve month’s procrastination over getting into the doctors surgery. It was far more mundane a cause than that. In the case of the doctor it was the groan at the thought of the hurdles the surgery places in the way of dispensing it’s services – a rant for another time. That coupled with the fact that every time it occurred to me was in the middle of the night when symptoms presented and woke me up. A cough to be precise, a dry, back-of-the-throat cough, the very kind I had heard was the early symptom of Christopher’s kind, the kind that gets ignored until much worse symptoms arise- the difficulty in swallowing; change in voice; coughing up blood. Hence the poor survival rate, fourteen percent if I recall the stats correctly. No-one suspects the cough, why would they. Everyone coughs don’t they. At least every smoker coughs and smokers get more bronchial conditions and that usually presents as a cough and when the rest of the symptoms wane, the cough persists, doesn’t it? And it’s hard to judge when the cough should have stopped…but after a while you know. you just know.

So every time I tell myself, time to get your ass to the surgery, which doctor will you see? Any one, it doesn’t matter, you’re going to get “any one” anyway regardless what you plan and, “anyway” it doesn’t really matter does it, so long as they know how to refer you to a man who actually knows something – a real doctor, a “specialist”. And then you drift off to sleep and in the morning you wake and the treadmill starts over. One thing takes over, then another and so on. Occasionally I remember and write a note and then the other thing, the hurdles thing, pushes it to the bottom of the pile of “much more important” stuff and next thing you know, it’s the middle of the night, you’re awake again and you’re coughing again…

It could have been the same with the x-ray but this took me only a few days. I didn’t worry about it, didn’t fret, just figured I’d get it done in a few days, no rush, I’d taken the big step, no big hurdles with this one. And nor were there, easiest interaction I’ve ever had with the NHS. I turned up, parked (legitimately) right outside the front door, checked in at radiology reception, no queues, no hassle, no delays, ten minutes later I’m having my innermost secrets photographed in not so glorious monochrome. Including the conversation with the radiologist as to why one removes one’s shirt for a machine that can penetrate all bar lead – buttons and unusual stitching in case you are wondering – the entire process from parking to departing took twenty minutes dead, if you’ll pardon the, oh never mind. I guess all those billions have achieved something after all, to be fair, though it seems to us mere mortals that this wasn’t rocket science – we understand why rocket science costs billions.

Looking back I can see how this might seem odd but at no stage did I fret over the results. Having consciously sought out a scan and an investigation to satisfy my conviction that by now, and given my symptoms, I must actually have cancer, it never actually occurred to me that I did – does that make sense?
I’ve had my blood pressure checked, always well within range, my cholesterol: “perfect”; Liver function: “fine”; this lump just here: “fatty lump, sir, nothing to worry about”. Easy for you to say, I thought back then, but this perfect person doesn’t do “fatty lumps” that appear for no particular reason and aren’t even a symptom of a disease – but given they’ve been there a good few years now, don’t seem to be going anywhere, and generally seem to mind their own business – apparently I do do these innocuous things.

You get my point? I’ve indulged a few investigations over recent years and all my fears have always proved groundless to the point that I begin to fear a reputation as a hypochondriac, though I’m not. There was absolutely no reason to suspect that this would be any different. It was a formality I had to go through because I owed it to myself, and to others, to get it checked so I could say that I’d done all the right things, proved there was nothing to worry about and now I could put it behind me and move on. Just like all those other formalities undertaken for precisely the same reasons and in every case, the caution exercised, the investigation complete, there was absolutely nothing to report”….

So it’s Friday evening, around 5.45 and I’m chatting to Simon in the office because Simon is always the last to leave and I like to talk to Simon. I like Simon generally but he’s especially good to share things with and generally have a pleasant rant about the state of the world, the galaxy and everything.

My phone rings, I was expecting nothing and so whatever it was would have been a surprise but, on reflection, some surprises are not as nice as others. “It’s Dr Fulker”, now that I was not expecting, on so many levels. I wasn’t expecting a call from a doctor because that doesn’t happen, at least not to me, no, it just doesn’t happen. I wasn’t expecting a call from Dr Fulker who I had only met once, a week or so ago. I certainly wasn’t expecting the next part, “I have the results of your x-ray”

…what x-ray? What’s she talking about? Oh, that x-ray, no,that’s not possible, I only had it done two days ago….and all the time that these parallel, rather than sequential thoughts, were firing in my synapses her other words only registered on a semi-conscious level and, even then, it wasn’t the words that made me pause and reflect. It was the quality of her voice. Having only met her briefly I didn’t have the usual tools to draw upon, the familiarity with inflection or intonation, but it was there, unmistakably. The measured, uncertain but gentle, hesitating sound of someone delivering bad news. Someone sitting next to you on a couch, knees closed, turned toward you, a wish to reach out and touch a knee as they speak, as if to stop you taking flight, both to reassure, to express empathy but as much to tempt you to stay seated, “…now don’t take this badly, but…” but not done, the touching knee, because you just don’t know each other that well, in that way.

All of this was in the voice. Who would want this job? The woman doesn’t know me, has no reason to care about me, doesn’t care in any personal sense but she is human and she’s fallible, almost vulnerable in a situation like this. All that professional deportment, that education, that status, it doesn’t take away a person’s humanity, that innate sense of compassion for another human being, especially when she knows, better than most, the likely finality of the message she’s delivering. She didn’t make the call because she wanted to, because she cared, she called because that’s her job and she wishes it wasn’t and because she has to, the act of doing it triggers the compassion. What a shit end to her day, she must feel.

She must wonder, when she puts down the phone, how I’m feeling. Did he understand the significance of those words, she must ask herself because she knows she didn’t explain it and I didn’t ask (because I knew) and was he just taking it very well? Was that why he seemed so calm and measured, so matter of fact, so polite? “Thank you so much for calling to tell me” isn’t what you expect, now, is it? She will also have wondered about the other option, the truth. “Shock” would be far too superlative a description but did he really take in what I just told him?

And that’s the truth, I heard every word, I understood every word and the meaning contained in those words but I can’t claim that I fully “took it in” on a conscious level. My body’s visceral and emotional centre took it in ok. The hairs on the back of the neck, the shiver rising from somewhere, the tightness in the throat, the tremor in the tear ducts – the control mechanisms cutting in on auto-pilot to suppress it – because that’s what we do, it’s what we’re trained to do. It’s what we have to do.

“The x-ray shows a four centimetre lesion on your right lung”. Long pause, not waiting for a response, letting it sink in, searching for what to say next. “I’ll arrange a referral to a respiratory consultant as soon as possible. It’ll probably be seven to ten days.”

“On your flamin’ nelly will it be seven to ten days…”. Even then, with all this swirling around in my head, even then it kicks in, even before I’ve actually absorbed the enormity of this thing. Save your approach for the passive ones, they need it, I need to take this on in my own way. I can’t beat it, I know that but having done this to myself, having procrastinated all by myself, now the objective is revealed, the gears get engaged, at least now I can actually take part in this thing. The challenge, the problem to be solved, the obstacle to be overcome, the emotions subsumed, subdued, there’s a problem to deal with, an urgent problem, no time for indulgences and certainly no time to hand over the fate of the outcome to someone else, especially someone that represents the laissez-faire bureaucracy you cannot abide. You’re not one of the followers, it’s innate, you dig out the facts, you learn what you need to know and you make your own judgment, make your own arrangements – for better or worse but it’s yours, not theirs.

“Well, Simon, that wasn’t the best news I’ve ever had”. I relate the conversation, not over egging it in any way, playing it down if anything. A moment of sharing, it felt comforting to share, it was the last I was going to feel for a while. “Please keep this between us, Si”. “Of course”.

There’s a burning desire to tell everyone you know, to get on the phone and call all your friends, muster help and support, make those apologies, arrange meetings, journeys, visits, all those things you know you’ve put off – as if you can make up for all that previous indifference – but most of all just to share. And then you quickly realise all the things that are wrong with that.

What if it’s a mistake? What if it turns out to be one of the other curable things that, at the absolutely outside chance, it just could be? You put your friends through all that grief for nothing…that’s an important issue right there, you’re putting them through grief. False alarm or not, what right do you have to do that? When is it right? What about Ri, my wife. If I tell her she won’t just be worried sick, she’ll be devastated, debilitated. No, I have to handle this myself until I know more, at least that. If it can be sorted then you can tell the story in hindsight and bask in the happy ending. If it goes the other way then we can at least wait until we have all the facts so that there’s no room for supposition, hypothesis. Facts are facts, you can plan, put things in order, face up to it squarely, even learn to be accepting of it. Uncertainty is constant questioning, what if, if only, try this, perhaps that. I can’t be doing it. There’s a way to deal with this like everything else. Figure out the facts, put them in sequence, get on with them and all the while continue to function, to carry on with those things that need to be done on a daily basis, a minute by minute basis. The pets still need to be fed, the dog needs to be walked, there are people relying on you, you have staff, you have customers, you need to sleep, to wash, to get up and start your day as if there were some point to it. No, no one must know, sorry you had to, Simon.

Simon leaves, I think he’s upset (see, it proves my point). I turn to the nearest computer, nip downstairs and pull out the file on the health insurance policy I’ve paid all these years and never used. Back upstairs with it so no one can see what I’m looking at. Ok, how does this work, better call them, start a claim and figure out how it all works. “Office hours 8am to 6pm” Damn! What are they on? People only get sick 9-5? Damn that doctor, why didn’t she call earlier in the day, now I have the worst of all worlds, its Friday evening, there’s an entire weekend ahead, I’ve just been handed a potential death sentence and I can’t begin work on a potential reprieve until Monday ruddy morning! …and I can’t even share it with anyone, can’t rant, can’t dump…can’t cry, can’t scream.

Gotta be practical then, what can I do? Read the file…the hospital list, ok, how does this work? Three lists, “Countrywide”, “London extended list”, “London super duper list” and you know, don’t you, before you even check…of course you do, these were both optional extras weren’t they? How were you to know, you’ve never been seriously ill, why would you think to include all the hospitals you would actually want to use should you ever need to, The Wellington, The Royal Brompton, The Cromwell. I check their web sites, yep, they are exactly what I need. Ri has a fabulous respiratory surgeon at Royal Brompton, her insurance covers her for the Royal Brompton, it doesn’t cover her for Toby Maher, the bright young guy she really needs and got a consultation with because we paid for it directly. Hers, of course, is the only insurance company that doesn’t cover him. This is the kind of thing that gives privatisation of health a bad name, unfairly so because it doesn’t have to be this way.

So I spend an hour or two researching who I need, the best consultants, the best hospitals. Of course, they are all the ones I don’t have access to. Let’s do it the other way around, take a look at those on the London list that I am covered for. Mostly NHS hospitals that have sought private clients as a way of making additional cash, so run on NHS principals but with nice food? Nothing impressed. The only one I felt I could accept might be Royal Marsden, not because of any good news on the web site but because of it’s fame and reputation. I resolve to call them first thing Monday morning, given that’s really the only option.

Monday morning: I call the Private Patients Appointment secretary.
“I have lung cancer and I need an urgent scan and a consultation with your top specialist”.
“Have you been referred by your GP?”
“No, I have no GP and I have no idea where the one who gave me this news might have referred me. I am paying privately, I don’t need a referral.”
“I can’t do anything without a GP referral”
“You do realise you are offering private health care? I don’t have a referral, I need a specialist, privately.”
“I can’t do anything without a referral from your GP”.
OK, I could have explained to her how our surgery works, the fact that I hadn’t a hope in hell’s chance of getting a referral letter out of them in less than two to three days and that I was not planning on wasting my time trying but, I figured, let’s skip that obstacle for now and move on.
“So, suppose I can get my hands on a referral letter, and suppose I deliver it to you by hand, how soon can we arrange an appointment?”
“Well it normally takes seven to ten days….” Where have I heard that before, oh yes, from an NHS GP…
“I don’t think you quite understand the situation. The average lifespan of someone diagnosed with lung cancer is 52 weeks. I have absolutely no intention of wasting one of those fifty-two waiting for you to make me an appointment.”
“Well, it might be less than that…”
“Thanks but I think I’ve heard enough. I’ll make alternative arrangements.”

I call The Cromwell. Within two hours I have an appointment for a PET/CT scan for Weds and an appointment with one of the world’s most highly qualified pulmonary oncologists. The consultation is at 6pm on Tuesday and, the lovely Lina asks, “please let us know if you can’t make it for any reason as Dr Lewanski is coming in to see you especially”. Those words, I wanted to cry as I pondered the wonders of chalk and cheese. These were total strangers to me but Lina cared, this consultant cared, it was evident in every word, in every act, in every call and the attention to detail, ensuring that I was kept fully informed at every step. This is health care.

It’s Tuesday morning and I’m in the shower when the phone rings. It’s the appointments secretary from East Surrey Abattoir, sorry, hospital. I literally shuddered at the prospect. “Thank you but I already have an appointment.” “Oh? When?” “I have an appointment for this evening at The Cromwell”. “What, today?”. “Today, yes. Thank you for calling. Goodbye”.

I’ve been working, it seems pointless but you keep going until you can’t, that’s what I learned, I don’t know from where. I guess from my mother. I kept smiling at how important people clearly felt their inane issues were. I pandered to them. I kept up appearances. It all seemed so empty, so well, like I said, pointless.

With Lina’s words in my head and me figuring “like I would miss this appointment for anything in the world”, I decided to play completely safe and give myself oodles of time. Travelling up on the Gatwick Express I started writing this little blog. It seemed important to write it all down so that…I don’t know. It just seemed important. It also gave me something to focus on. Arriving at Victoria with more than two hours to spare, I waited till everyone else got off the train. They were all in such a rush, why? Here I was with less time than any of them and I was not in any kind of a rush. I wanted to distance myself from their rush, take my time, everything deliberate, calm, remembered. These were important days for me and I wanted to remember them. I would walk to The Cromwell, it was an unseasonally beautiful sunny February afternoon and I wanted to experience it in a very close and personal way. Crossing up to Eaton Square, eyes turned upward, as always when walking in London, to see all the things that are so overlooked as people hustle and bustle through their busy lives. I noted the prevalent use of clipped box and other topiary, even the odd Niwaki – obvious if unimaginatively used plants when all you have is a balcony to sculpt with. I was studying people too. Al kinds of people, the well heeled and the not so well, the students and the retired, the busy young things, the busy working people, the constant rush of the traffic. Through Sloane Square, up Sloane Street, down Brompton Road, past so many so familiar places, past the Vistoria and Albert, passing the Natural History Museum that cathedral to the things I love and my totally absorbing fascination, life itself.

The reception staff in the Radiotherapy department were welcoming, smiling folk who knew exactly why they were there and what their visitors were going through. “You’re very early?”, they said. I explained that Dr Lewanski was travelling in especially and they thought this was very considerate. “This is one appointment I was never going to miss” I countered to assure them that altruism is a two way street. Alina, in the way of someone showing you the ropes you were going to get very familiar with, showed me how to work the coffee machine and which was the strongest brew.

Dr Conrad Lewanski, greeted me with a warm, gentle smile and a firm handshake. We sat and he asked me all the things you would expect. He took his time, an hour of his time. He let me talk about things that were clearly not important to the reason I was there, he encouraged it and joined in. Every now and then he would steer us back to “business”. He wanted to make sure that I knew everything I needed to know, that I had asked all the questions I wanted to ask. When my eyes welled up, as they did several times, he would pause and respect my embarrasment. Most of all he wanted to tell me that there were lots of good reasons for remaining optimistic but there was no time to waste. He wanted to know what other symptoms I had and was clearly excited by the fact that I had none. I told him about my walk from Victoria, at which he happliy crossed “breathlessness” off the mental list of typical symptoms. My scan was moved to Thursday at a time when the required starvation would be less of a burden for me. An appointment was made for another consult on Friday, at which time he would have all the results and we would know the situation for sure. He urged me to remain optimistic, implied that he had a good feeling about “this one”. He allowed me to hang on to the possibility that it might not be cancer though he also let me read between the lines sufficiently to appreciate that was all that it was, a hope. It all hanged, in reality, over whether this little invader was a well-behaved individual or an exploding fire-cracker sending it’s starburst seedlings throughout the rest of my body in minute fragments.

So, it’s Thursday and first off I have to give blood for the tests, wouldn’t do to try it with the green-glowing radioactive blood that I’ll have after the scans. Then off to have my lung function tested, fabulous nurse who gave me every possible encouragement to keep blowing when my head felt like it would explode. 112% on the initial blow (that’s 12% better than average for the arithmetically challenged) but overall 76% of normal. Not bad, Conrad guessed it would be around 70% so, hey, this is ten percent better than that, right?

Then, here I am in a small room, sitting on a bed, dressed – if you could call it that – in one of those silly hospital gowns that I haven’t figured how to fasten. So it’s just wrapped around me…there’s some debate over whether or not I should have drunk black tea and coffee when told to fast. I assure the lovely Claudia that Dr Lewanski did tell me that was ok and that I confirmed it with the guy who called yesterday to confirm the appointment – I even repeated back, “so just water, black tea, black coffee, no sugar, right?” “That’s exactly right!” he says to me. I realised an issue with The black tea thing as I was getting ready – Ri isn’t an incredibly observant individual, especially first thing in the morning but it would be just my luck for her to spot it and realise that a) this lack of milk was a total break from the norm and b) as a veteran of many hospital exploratory missions and operations that “no milk” was the order of the day…I needn’t have worried, she didn’t spot it, which is just as well as I didn’t have any clever excuse I could think of.

Claudia stabs my finger and checks the blood sugar – can she see that I had some in my first cup of tea? An injection of radioactive glow juice, but a warning I might need another, something to do with the coffee, my Pet/CT becomes a CT. followed by a PET. No effects of the first injection at all, (really shouldn’t have put that quarter spoon of sugar in the first black tea…).
I’m escorted back upstairs and handed over to Michelle in the CT room. A little difficult to understand, her east-Asian accent, very nice but not big on the charisma thing. Seemed to really struggle to get a vein up in my left arm, she felt the right had been abused enough with the blood tests (did I mention those? oh no well there were the blood test phlebotomy appointment first, interesting conversations about rubber gloves and people smuggling drugs through customs (programme on TV, Nothing to Declare). She could see “a nice big juicy vein” but for some reason didn’t get it to come up the way she wanted. Lots of rubber straps, clenching of fist and finger slapping later it appeared the cannula was in but I didn’t feel it happen so good on yer, Michelle, nice one.

When that stuff starts pumping, whatever radioactive goo it is, your face gets a flush like the biggest blush you’ve ever felt, simultaneously your bladder feels warm and full, in a comforting way as if you could lie there and wet yourself and not fear doing so but rather indulge in the warm comfort of it. Odd how it’s not just the mental surrender one feels in the impotence of the situation, the abboragation of responsibility, the deference to the professionals but even your body becomes similarly compliant to whatever forces are deployed upon it.

It’s an entirely comfortable, almost comforting experience, the knowledge that your body is yielding up its deepest darkest and hitherto well hidden secrets to the overpowering might of modern technology. No longer are these things strange, awe inspiring secrets of the science of the body, they have been conquered, they shall be revealed in all their base ordinary mundanity. So much the better if these steps are taken early enough, the fear is that we are not looking at a nice, tight, contained circular lesion but rather a scattergun pattern of itty bitty cancers swirling around looking for a dark, secretive hiding place amongst the maze of the lymphatic system. If that’s what we find then, folks, let’s get real here. If on the other hand, it turns out to be the most orderly and well mannered of evil critters – strike you as a bit much to hope for? – then hey, they can cut out a piece of my right lung and toss it away and Bob, as they say, becomes a close blood relative.

So CT over I’m escorted back down the stairs into the care of the antipodean Claudia (Melbourne actually) who politely parks me in my waiting room for half an hour with the lights turned down with instructions to just rest and relax. Not the most arduous of preparations I’ve ever had to undergo but leaving me in silence with nothing but my own thoughts doesn’t come without its own special challenges. When she collects and shepherds me into the room containing the waiting space-age marvel of a modern day PET scanner the first thing I spot is the CD in the boogie box, “Do I get music?”. Indeed I did and great it was too, perhaps it’s a sign of the average age of today’s cancer patient or perhaps it’s such fabulous and timeless music that it will endure across the ages for ever more. If I recall the sequence, Dionne Warwick, The Four Tops, Jimmy Ruffin, Smokey Robinson, after that I’m a little hazy but there were only a few more tracks before the whirring sounds and the various horizontal manoeuvrings of the table bed ceased and I was delivered to the brighter lights outside the machine signalling the end of my all too simple, too pleasant experience.

Back in my little room, removed from the strange embarrassment of hospital gown, slippers and robe and once more in my own comfortable skin, the inevitable impatient question but, what do you know, she’s forbidden to reveal anything. Not so much as a nod or a wink or the proffering of glossy literature on suitable funeral homes. A bit of a disappointment but not unexpected. At least this is NOT the NHS and so I only have to wait until midday tomorrow, one more difficult to explain trip to London – these interminable legal meetings, oi vey! So midday tomorrow and Conrad will tell me what? Can he tell that it is, incontrovertibly, the dreaded cancer, I think he can but they will still want to do a biopsy of course to determine which of the seven (yes, seven) different species of cancer if might be. They range in severity from the benign “I was just sitting here because it seemed to be a nice piece of real estate upon which to hang my hat” variety through to the raging, ghengis khan types that just want to kill, conquer and ultimately commit suicide by literally biting the hand that feeds and killing me, its obliging host. I can’t help but wonder, well, wouldn’t you?

So, my array of tests over, I met with Daniel yesterday, what a lovely man. I felt I had to share this with him, for very practical reasons, and felt relatively easy about it because on the one hand, though we are very friendly, he’s not what you would describe as “inside one’s circle of close friends – so he’s less likely to be deeply affected by the news, I hoped. On the other, not being in that circle, the information was certainly safe in his hands. I need new trustees for the trust, and I believe I can trust Daniel to treat such a role both professionally and in a way that he would think I would have wanted. I also figure the issue of a will has kinda become rather important and, it occurs to me as I write, it would be a good idea to prepare a list of people who should be advised of my departure so that Ri doesn’t have to cope with that in the midst of what will for her be considerable grief. But back to the will, again I need an executor and who better than Daniel to both draw it up and execute it. All in all this is quite a considerable burden to place on one person, I must make sure he’s properly compensated so there is no contention in his mind, or anyone else’s, when it comes to rendering an account for his services as executor on both matters. He readily agreed to everything i asked of him, went out of his way to reassure me in various ways and proffered his help in any way at all whenever I might need it. Last night he sent a very touching email just to prove that my first contention was entirely wrong. He was clearly very affected and has just moved to the heart of that aforementioned circle.

So I’m once more aboard the Gatwick Express, it’s Friday and I’m heading in to meet Conrad, Dr Lewanski, to get his verdict. One more invented business appointment to satisfy Ri’s curiosity which is fast becoming ‘suspicion’, even the ubiquitous “are you having an affair” enquiry this morning. I am strangely calm. In a sense, this is the biggest event of my (only) week long journey to date – it seems much longer. A genuine Pullman Belle train to my right! Fabulous sight and has got the whole train buzzing and phones/cameras clicking. See what I mean? Calm, as always, it’s a thing, a task, a challenge, something to be dealt with. Gather the facts, assess it calmly, decide on a “solution”, a course of action at least. Here we are at Victoria, no rush, let the crowd move out, my time is precious and I again refuse to join in the hectic bustle for no apparent reason. Twice this week I’ve walked to The Cromwell. This time I don’t have the spare hour. I’ll walk part way and hail a cab to finish the journey…

Sloane Square, by a different route this time, good place to stop, sit, I know, I know but also to have my “last” cigarette. That’s three different routes I’ve used and on the way, a piece of memorabilia. “Eaton Continental” on the corner of Eaton Terrace and, what, Chester Row? A little grocer-cum-reckons-itself-a-bit-of-a-speciality-foods store, a customer from circa 1979/80 for my Redmile-Gordon Provisioners (Wholesale Division). Wow, I’d completely forgotten.

From here I can walk a little more, grab a cab later or grab it now and walk locally. Don’t want to be late for my own sentencing now do I? I think we play safe and grab the cab now.

On the radio in the cab, a discussion about the mansion tax, talk of poor people walking out of the estate agent’s with a cheque for two million quid because they had to sell the house as they couldn’t afford the tax…”Not a problem you and I are likely to worry about, eh, cabbie?”. After that of course we spent the next five minutes putting the world to rights and then I’m here. Familiar smiling faces in Radiotherapy reception, I remember the coffee machine instructions. Bizarre, there’s apparently something special about Fridays, a sort of club has formed. Three guys all around my age or more, everyone knows each other, chatting about the different people they see, calling out pleasantries to the reception staff – about whom they have clearly learned some personal details. Is this what it’s like when you start a treatment programme? I guess it would be. People you don’t actually know but whose shared experience removes all barriers and the need to explain or apologise. Hmmm…

“You guys sound like regulars”, I volunteer to introduce myself. “Us, we’ve got loyalty cards, we have”, jokes one. I laugh. I was going to make a crack about living long enough to collect on the points but that’s the kind of crack reserved for established friends or acquaintances, not Londoners you just met thirty seconds ago. “This your first time?”, asks his friend. “I’m here for my sentence”, I offer, I quickly tame it down but still got the chuckle I was aiming for,”Well, my diagnosis”.

It’s 12:10, he’s running late. On one level it seems cruel, on another it likely means he’s spending time with someone who needs that time. Who wouldn’t want the same thing in his place?

A mature nurse chats to some of the patients, clearly familiar with them and genuinely great in the way she relates, like a kindly aunt. “Is this your daughter?” she enquires of a guy about my age, mid-eastern origin, cool looking, westernised. When he confirms, the nurse turns to the daughter and, for conversations sake, asks “So, how is he behaving himself?”. “Not so good with the smoking”, she replies. You can feel the unspoken plea behind the words, it’s gut wrenching stuff. 12:20 now.

At 12:25 and fearing I’m supposed to be meeting somewhere else I step up to the reception desk just as Conrad is approaching to invite me in. By the way, that’s what happens in a private health care environment, doctors come to you and invite you in, they don’t summon you with a bell or at the bidding of an underling.

I don’t know where I start, how I carry on relating the story from here. I guess I have to explain it all but mostly I just want to run out in the street screaming, jump up an down shout, hug perfect strangers and generally CELEBRATE! I don’t understand why they don’t keep a fully stocked bar in reception for just such occasions – I suppose it would be a little insensitive for some but I’m sure most people in this situation would just want to share in any good news story that was going. We, Alina/Lina/Stephanie and me, we’re going to lobby for one.

I guess I should explain, to myself more than anyone. Yes, I do have cancer, that’s now an established and indisputable fact. Yes, I do have a 4.2 cm spitulate lesion on my right lung. Ugly looking little fucker. That’s what we’re celebrating. That’s what I’ve got. That’s the sum total of what I’ve got, that’s the good news – all I have is lung cancer!! I don’t have fifteen other cancers, I have nothing creeping around in my nooks and crannies, I have nothing in my lymph, in my spine, in my throat (despite the huge lump that’s there right now), in my groin or my bladder, in my prostate or my colon, nothing, not a solitary sausage, not a minute fragment. I just have what looks like one huge evil creepy looking, spiky lesion that looks like its crawling, hunting, espying it’s prey as it feeds glutton-like on the sugars in the fluid they injected. It feeds so much, it steals so much of the available sugar and consumes it with such energy that it glows white hot on the CT, white hot! Other organs consuming said sugar at a fast rate only rank yellow on the full colour display, the colour being heat sensitive.

But that’s it. Evil as it looks, voracious and aggressive as it clearly is, it has actually behaved itself impeccably, keeping itself to itself. It has not exploded its cells into a myriad parts and scattered them across my finite internal universe. It appears operable. It appears that whilst I have to donate an important and irreplaceable part of my lung – and my resulting lung capacity – this thing can be removed. It can be cut out. In short, it can be destroyed – before it destroys me.

Conrad, we’re operating on first name terms at my request, after all, as I said to him at the outset of this consult, he’s likely to be the most important person in my life, for the rest of my life, however long that may be, or not. Anyway, Conrad was just great. He was almost as excited as me. He showed me all the scans, turning my whole body around on the screen in glorious full colour 3D, pointing to my various organs and showing not just the total absence of any black specs (we’re on the PET scan now not the CT, come on, keep up), but also the perfectly healthy appearance of each of them. He has of course combined that with the blood test results which confirm exactly that. Cholesterol: perfect, Liver function, all the numbers: perfect, this is a body that just keeps on trucking regardless, it just does its thing, it works, there’s just this one bastard invading organism that it couldn’t stop. “With a liver like that you can drink yourself silly”, says Conrad with a big smile on his face.

He’s spoken to a colleague of his, Brian O’Connor who would do the bronchoscopy that I need. They give me a sedative and then slide a camera/whatever/thingumy up my nose and down into the lung where they (hopefully) see the little critter from the inside, bite a small chunk out of it and take it away for analysis. A biopsy if you will. There is a possibility that it is of a kind that they can’t easily remove but Conrad really doesn’t think so – he’s been right so far so I’m inclined toward optimism.

He calls his friend who operates out of the mews near the hospital entrance and yes, he will see me more or less immediately for a consultation. At his request, Alina offers to escort me over there and on the way she said something to which my eyes, throat and tear ducts responded in telltale fashion. Without hesitation she grabbed me and gave me a big hug, sweetness itself and how wonderful to feel that gentle human contact, it took every effort I could summon to let go.

Brian is a lovely man, a big softly spoken Irishman, a Dubliner who migrated twenty years ago and time has softened that Dublin accent so much I thought he was from the west. He looks at all the pictures and is clearly amazed at what a lucky little sod I am. “Normally”, he says, “when I’m talking to someone with lung cancer my eyes are down on the floor because, frankly, I’m usually looking at a death sentence.”. He continues, “In your case, you know what? I think we’ve got it just in time”. Again with the throat thing and the tear ducts, for about the tenth time today. I feel like a great big stupid soft thing but then, in my more self-forgiving moments, I figure I have some justification.

We talked about the smoking. We talked about the insurance company. In this context Ri cropped up in conversation, the ironies of fibrosis for a non-smoker, and he asked who her lung guy was. “excellent guy” he says when I tell him about Toby Maher, “leading world authority”. “I don’t know him personally”, he continues with perhaps the most glowing reference of all, “I know his ‘boss'”.

So I’m on the train home, writing this and I get the call I’ve been waiting for from the insurance company – they will cover me after all. Seems this is my lucky day.  Thank you Hitch.

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A hostile environment or just incompetence?

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During the much touted Windrush Affair, which dealt with the inept and outrageous treatment of British Citizens, formerly from Commonwealth Caribbean countries, much was made of government responsibility in the matter. The phrase “hostile environment”, first coined by Liam Byrne, Labour Immigration Minister, repeated by Alan Johnson, Labour Home Secretary and adopted by Theresa May and Amber Rudd, almost certainly arose amongst the civil servants in the Home Office. It was certainly the same policy they had carried out for many years and was in evidence when I married my New Yorker wife in 2000.

It’s nothing they have against immigrants – they’re just hostile to their fellow human beings and to doing a good job.

Having this laid at the door of government was not unfair but having it used for party advantage was risible. The government, of course, claimed it was aimed at “illegal immigration” and I’m sure it was, in their minds but they rarely admit that the people employed to enact government policy are, well, less than perfect. Ordinary human beings from whom all capacity for exercise of common sense and reason has been extracted, squashed or simply banned.

Let’s start at the beginning of my own personally torturous story. My wife to be was supposed to come to UK and settle in, whereupon we would get married and, at some comfortable date in the future, she would take British Citizenship. Luckily it occurred to me that this country I love is far more in love with rules and bureaucracy than with me. Perhaps I’d better find out what those rules were? I logged onto the Home Office web site and had a good read. I was thoroughly confused.  I found their phone number, with some difficulty, and rang it. After one ring my call was intercepted by a good old fashioned answerphone and I listened, attentively, to the brief message: “All our lines are busy now, please call back later”. How, I wondered does an answerphone know that all lines are busy? It doesn’t. This was before any implementation of a managed telephony system. This was an old style answerphone. Fair enough, I thought. They’re busy so they’ve switched on the answerphone, I’ll try again later. Over a period of a week I rang that number at all times of day and night, even 2am on one occasion. The unspoken message was clear, we have no intention of ever answering your call, don’t bother trying and, by the way, there’s absolutely nothing you can do about it.

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I returned to reading the web site. It advocated that I should employ the services of an immigration lawyer, if I needed help. I just wanted to know what the rules were, you’d think that would be simple enough, and free. I rooted out telephone details for a couple of said lawyers. I couldn’t understand a word that was said in the first instance. I figured I’d got a wrong number but on the second call I realised the source of my confusion. The lawyer I spoke to, and of whom I only understood around 50%, was completely bemused that I, an obviously articulate, white, English male would need any help bringing my obviously American betrothed to his home country. He did however offer to see me in his office somewhere in Southall if I would speak with his secretary. I tried, when it all became too difficult I decided this was not for me.

I returned to the web site.

From what I could make out, the challenge was that if my future wife came into the country “with the intention” of getting married, she must declare this upon entry. If she did that, she’d be allowed in but would not be allowed to work or make any claim for assistance for a period of two years. If she came in without declaring this and then married, she might be refused residence, ergo be deported. Phew! God knows what happens if you fall in love whilst on holiday and get married and, how on earth does one prove the lack of intent to marry? What if you mused on the matter, idly, over a martini? It felt to me that this way, there were a hundred booby traps one could easily fall into.

If, on the other hand, you marry outside the country, then apply for a visa before entering the country and come in together, all is allowed, no restrictions of any kind. After five years, automatic Indefinite Leave to Remain. So, no contest and, as added encouragement, a wedding in New York City sounded like fun.

Back to website to find out what I would need to support the visa application. Nothing. Zilch. Nada. OK, bright idea, what about the British Embassy in New York, did they have a website? Bingo!  (By the way, they don’t have one anymore)

Not only did they have one, it was welcoming and relatively informative. It even had a phone number. I hardly dared hope but I called anyway. They had voicemail, I was invited to leave a message and though the cynic in me wondered why on Earth I might fall for that ruse, I figured I had to try everything. So I left a message. I left my phone number, apologising for the fact that it was a U.K. number and all but offered them a great excuse for not following through.

Later that evening, in one of my local pubs, my phone rang. A bright, young, well-spoken New Zealand accent greeted me and *thanked me* for leaving my message. Whilst I was reeling from the absurd comparison of attitudes (and walking outside in search of better reception) I spluttered out my gratitude and surprise and explained my situation. The young women took it all in and was wonderfully effusive at how romantic she found all this and how she’d be delighted to help. She promised to have a word with one of the consuls *and have them call me*!!  A vivacious Kiwi working in the service culture of NYC is a world away from my everyday experience – and what was to follow.

Good as her word, she did speak to the Consul and, good as his, he called me. We had a lengthy conversation in which I explained the inordinate difficulties I’d had getting this far, how outrageous the lack of access to the Immigration Dept at the Home Office was and he not only agreed but expressed his own exasperation. By the time we finished, I had a clear and complete list of exactly what documentation I needed to bring. I knew, for example that no bank statements were required. I knew that I was not under any obligation to prove any specific quantities of cash, only that I was in gainful employment. I also knew, because I asked, that I only needed my last divorce certificate, not any previous ones. It makes sense, to get married that last time, you’d need to have proved you weren’t married to anyone else so, only the last divorce cert proves that now.

I was all set. I assembled everything and we made our plans. It was going to be tight because I could only spare a week away from work. It went like this:

Sunday – fly to NYC

Monday – my wife would fly up and join me.

Tuesday – we go together to City Hall to get the licence

Wednesday – Precisely 24 hrs after the licence is granted, we get married at her brother’s house by the local Deputy Sheriff (I kid you not).

Thursday – we arrive bright and early at the British Embassy, we present our papers and get the visa.

Friday – we fly home to England as husband and wife.

Simple, right?

Well, our week was going to turn out to be an interesting one. It had it ups and downs, let’s say.

Ri, for that’s my wife’s name, was living in Lexington, Kentucky. She’d had a hectic couple of weeks. She’d held a yard sale to get rid of possessions, given away most of what she owned to others who would make good use of them. She’d said emotional goodbyes to all her ballet students, who loved her like a sister/mother/mentor. She’d said equally emotional goodbyes to her work colleagues at Planned Parenthood, where she’d been a passionate campaigner and Director of Education, and to her many dear friends. Most of all, she said a tearful goodbye to Zodos, her enormous Maine Coon cat. She was leaving behind her entire life for this incredibly risky but exciting adventure in a land far away.

Her flight was a disaster. Bad weather cancelled flights, rerouted her and separated her from her baggage. She was already on an emotional knife edge, now she risked missing the tight deadlines and losing the few possessions she had left herself with. She was bereft, distraught and beside herself with worry – and totally exhausted. All this I only encountered in the numerous telephone calls at particularly stressful moments or when there was actual news to report. She, of course, was living every moment of it.

Finally, she had a flight and was en route once more, sans baggage. I decided she needed a little something “special” so I spoke to the chauffeur company at the hotel and organised the swankiest limo they had. I met Harry, our driver, a lovely sweet black man who “got it”, exactly. He’d seen his own lookalike in the movie “ Pretty Woman” and knew exactly what was called for. He even opened the sunroof and let me stand up through it as we drove down the streets of NYC, getting in the mood.

 

We picked Ri up from the airport, Newark I think it was eventually, in precisely the style I wanted for her and she loved every moment as she started, finally, to relax.

The very next day, we hi-tailed it down to City Hall to see what we had to do to get a marriage licence. I’ll spare you. Suffice it to say that government bureaucracy, inefficiency and callous attitudes are universal. They are truly global. The highlight for me was the scrappy piece of paper sellotaped to the glass screen between me and the unkempt teenager on the other side. I hadn’t really taken it in until the mute conscript on the other side recoiled at the sight of the dollar bills I was offering. He tapped the notice in an irritable manner and I read:

NO CASH
NO CHECKS
NO CREDIT CARDS

My mind ran through a mental recall of other appropriate mechanisms of financial exchange and drew a blank. I shrugged, he wasn’t looking. “How do I pay you?”, I pleaded. It turned out that the only mechanism his employers would allow him to handle, for fear he might pocket the funds, was a Cashier’s Check made out to the City, which I could obtain from a single bank half a mile away. Like I said, I’ll spare you the rest.

So, it’s late Tuesday afternoon and we’ve finally got our Marriage Licence. It took longer than expected and because it has to be a minimum of 24hrs old before we can marry, we had to push the marriage back a couple of hours and reconfirm our Deputy Sheriff. Ri wanted to take the opportunity to show me her home town and, in particular, Central Park; the background to so much of her life, the stage upon which so much of it had played out. Whilst we’re strolling in the beautiful May sunshine, my phone rings. I always hated that. In those days the cost of an international roamed call, even incoming, was enormous and usually turned out to be someone selling you something – no CallerID on international calls. It was the British Embassy Consul that I’d spoken to weeks before from the U.K. I was amazed! He had made a note of when I’d said this was all taking place and had “reviewed his notes”, apparently. He was very pleasant but then he said, “You have brought evidence to show that you can support both of you, haven’t you?,” he asked inquiringly. What had brought this on, I had no idea. “No!” I exclaimed, “no I haven’t. That’s because I asked you specifically if that was necessary and you explicitly told me it was not! We’re here in New York, we’ve just got the marriage licence and we’re getting married tomorrow. What on Earth do you need from me?”

In the most disarmingly matter of fact tone, he said, “Well, we’ll need a letter from your solicitor, attesting to your ability to support yourself and your wife.”

I tried to remain calm, to be polite, not to lose my temper but I have to confess it took every ounce of self-control I possessed and, even then, I’m certain my malcontent was blatantly evident. “Let me get this straight,” I began. “At 5pm in the afternoon, 10pm in the UK, with just one day before I present myself at the Embassy to obtain this visa, you call to tell me that I need a solicitor, that many people would never have need of, who if I have one will be getting ready for bed right about now, to attest, against his professional reputation, that he knows enough about the intricacies of my financial situation such that he can state without hesitation that I can afford my wife. You expect me to have access to his contact details and for both of us to have access to a fax machine and that he can do this at the drop of a hat. Have I got that about right?”  Something like that.

“Well”, he spluttered nervously, “Err, yes.”

“I’ll see what I can do”, was the only response I could muster.

hostile

So, I called my lawyer at home and explained the dilemma.  Luckily I did have a lawyer or three with whom I was on good terms.  This one, in particular, is currently serving a hundred year jail sentence, or something, for a massive fraud.  I’m very sorry for him and how he came to be in that position but I don’t think it was anything to do with my visa application!  On the other hand, it does amply demonstrate what a complete and utterly frivolous exercise it was, asking a lawyer to attest to something, this mundane, if £100 million tax frauds could be his penchant.

Anyway, good as his word, when I woke up the following morning, there was the fax of a letter from him, pushed under my hotel-room door.  How many people, let’s say from deepest Africa or Asia, could have achieved that and, if they had, how many consul’s would have treated what it said with the same deference coming from a swanky London address, if it came from Lagos, Nigeria, for example?  The situation is, frankly, laughable but at the time is was a major source of unnecessary stress.

So we got married that day and I only skip over it because it’s not the point of the story, which has already become long enough.  The next day we went down to the British Embassy in New York City, bright and early.  We weren’t the first ones there but we were greeted in a pleasant manner by a shabby little Greek guy who smiled a lot and as he greeted me, crammed a torn-off scrap of paper into my hand and one into Ri’s.  I looked at mine, bemused and saw that it had a number scribbled on it, in pencil.  I am not making this up.

I mused for a moment and then realised, okay, it’s like the deli counter queue in the supermarket.  Someone’s going to call out our number at the appropriate time and that way we all get processed in sequence, makes sense.

So we entered a large room in which 20-30 people were milling around.  We got chatting to some and were finding out, from a variety of nationalities, what their particular adventure was all about, answering questions about what life is like in the UK and stuff like that.  We were all generally having a good-humoured getting-to-know-you session, all resigned to the fact that this could take a while, when our smiley little Greek guy came into the room and tried to make himself heard.  Being so short and obscured by everyone else in the room, this wasn’t as easy as it sounds but by a process of Chinese whispers we all got the message that he wanted us to line up, in front of one of the windows, in the order of our numbers.

Not at all like the Deli-counter queue.

By this time, 20-30 more people had joined our merry throng and the task, it seemed to me, was to find the person with the number immediately prior to mine so that I could dutifully line up behind them…..just as soon as they figured out who they were supposed to line up behind….

“I’m 27, who’s 26?”, someone called out.  “I’m 42, has anyone got 41?”  “What number are you?”  “31”, “17”, “48”…..this was going to take a while.  I have honestly never witnessed such a chaotic scene as the numerous fragments of a conga queue accumulated, each manoevering around the room, trying to join up the broken elements into one coherent snake.  It took about 20 minutes but it kinda kept us amused and certainly brought us together, literally and metaphorically but largely in the shared sense of incredulity.

Finally, we’re in our place in a queue and someone has apparently appeared behind the glass screen.  I looked at the number of people in front of me and quickly calculated that we were going to be standing there for a good couple of hours, or more.  Ri and I took it in turns to sit and rest our feet, before swapping back to maintain our place in the completely unnecessary queue.  Its necessity had become apparent, however, within moments of us completing our exquisite dance when our little Greek friend proceeded down the queue, from the front, collecting his precious torn-off scraps of paper with their numbers, scribbled in pencil.  A prime example of recycling at work?  I guess austerity had begun some ten years earlier in the Consular Service than in the rest of government.  So, now, deprived of our official numbering system, it was essential to retain our place in the queue, you’ll understand.

After what seemed like an interminable wait, with the occasional shuffle up by one meagre place in the queue, we arrived at the glass window.  The Mancunian woman behind the glass, the one with the total charisma bypass, motioned for me to hand the paperwork through the slot at the bottom.  She never once looked up, she never smiled, in fact her facial expression never waivered from its default setting of sour.

She started to rustle through our papers.  She looked at a section of the form, the part dealing with previous marriages, and located my divorce certificate in the pile of documents.  She rustled some more and then, again without looking up she chastised, “Where’s the other divorce certificate?”.  Rattled a little, having spent weeks preparing so carefully and being literally on the brink, I retorted “But the rules specifically said I only need to bring the last one, it specifically said that….”

“Just asking”, she said in a tone that was both flat and simultaneously mocking and implied she’d omitted the phrase, “just kidding”.

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Then, “Where are your bank statements?”.  “There are no bank statements, I responded, the rules don’t ask for back statements, if I’d been asked to bring bank statements I would have brought them”  the sense of panic was clearly evident in my voice.  I went on to relate, very briefly, my conversations with the Consul, his omission of any need to provide evidence of means, his call 36 hours earlier telling me I needed the lawyer’s letter to which I pointed…..  “Can’t you just get a printout from an ATM?”, she asked, to the papers in front of her, not to me.  “I’m British, I said, my cards don’t work over here.”.  This may all sound strange in 2018 but in 2000, not every ATM was VISA/MC compliant for UK Debit cards.  Ri piped up, “I’ve got one”.  “I need one for each of you”, came the miserable Mancunian from behind the screen.  “How much does it need to have on it?”, I asked.  “Doesn’t matter”, came back.  At this point I wanted to say well if it doesn’t matter, why in the name of Christ do you need it?  I probably would have said that but I had just remembered that I had been solicited by phone a few weeks previously, by Citibank who were on a drive to open more accounts in the UK.  I had gone along with it and had opened an account with a token £500 for no other reason than they made it sound easy and, get this, that another bank account may always come in handy.  Handy wasn’t the half of it on this day.  I thrust my card into Ri’s hand, told her the PIN and, whilst I held my ground at the window, ushered her downstairs to the street to get us a couple of printouts.  When she appeared, somewhat breathless , some four minutes later she was beaming with success as she waived the two little chits in the air and thrust them under the window to what I can only describe as a disappointed grunt. Yes, it really did feel as if we had undone her plans to scupper our application.

Finally, she was done and without having made eye contact with us for the entire twenty minutes, she threw our papers in a basket with a few notes and other attachments fixed with paper clips and instructed “See the cashier, next window”, before calling “Next!”.

I’d not really figured out the “next window” thing but now I realised, this Consular Official, the Mancunian with the charisma bypass, was apparently not trusted to handle the dosh.  That was above, or below, her paygrade.  We resumed our place behind the same people we had previously stood behind in the first queue but felt somewhat elated that no one, so far, had refused us a visa, nor demanded of us anything we couldn’t produce – at a push.

While we were in this queue I spotted the price list on the wall.  It was one of those boards where you press letters and numbers into position, like they use in café’s and other old-fashioned places.  It had a glass door with a brass frame, as if someone might want to steal the numbers or try to cheat by rearranging the figures to reduce the price of their particular service.  I scanned the list, looking for the appropriate item.  “Spouse Visa £480.00”.  Blimey!  I thought.  It had never even occurred to me to ask.  I scanned up and down the price column, most things were in the range of £10-30, I think something was £45.  Importing wives appeared to be a lucrative little number for the government.  I guess they worked on the premise that there is absolutely no competition.  It’s not like choosing to go somewhere else for your holiday or having someone else certify a document.

I had plenty of cash on me, some sterling, mainly US dollars.  The prices were all quoted in Sterling so I figured I’d use up what I had (given it was a lot more than I expected) and hand the rest over in dollars.  I got to the window, and presented the fellow with some chit or other that the charisma bypass had given me.  He retrieved the my file, and asked me for an amount in dollars.  I handed him about £400 in sterling and asked how many dollars he’d need to make the difference.

He responded, and once again, I am not making this up, “I can’t take pounds”.  Flatly, just like that.  “You mean, Sterling?”, I clarified.  “Right”, he affirmed, “Pounds”.

I was aware that I was being artfully elaborate but I felt the situation demanded it:  I pointedly took two paces backward, and craned my head as I scanned the room, taking in the various paraphernalia that affirmed the nature of the building in which I was standing and I held out my arms in gesture at everything around me.  I returned, two paces forward.  “I am right in thinking that I am in the British Embassy?  This is British Sovereign Territory?  I only left home a few days ago and the currency of The Crown when I left was still Sterling.  Has something happened?”.  Of course I was being blatantly sarcastic and, I felt, with absolute justification.  He wasn’t moved.  “I can’t take pounds,” he said, “what would we do with them?”.  “Put them in the bank?”, I volunteered.  “In a Sterling account in London through a US bank, in the same way that I hold US dollars in New York through a UK bank?” I explained, helpfully I thought.

“Well we can’t take pounds, you’ll have to get dollars.”

I checked, I didn’t have enough.  At least, I thought to myself, they do actually accept cash so, one up on the New York City bureaucracy we’d dealt with just two days previously.  I asked if there was a bank nearby and he confirmed that there was one on the ground floor.  My “friends” in the queue assured me they’d hold my place for me and let me back in when I returned so I headed down in the lifts to the ground floor.  Yep, there was a large branch of one of the domestic US banks and I ventured to the counter.  I handed over my Sterling and asked to change it into dollars.  The woman was cheery and friendly and I wondered what it would take to have her organise a class in customer service for the folks just six floors above her head.  “ID?”, she enquired politely.  “Err..” I fumbled as I realised that my passport was up on the 7th floor along with every other scrap of ID I possessed and I tried to translate that to this pleasant lady.  As if talking to a moron, but ever so politely, she suggested “Driver’s license?”.  Feeling ever so dumb but instantly realising the difference between a traditional US licence, complete with photograph, and my large sheet of paper folded to one sixth of its natural size size, with lots of type and absolutely no photograph, I decided to tough it out.  I held it out proudly.  She took it from me gingerly, it looked pretty fragile even then, it looks positively decrepit now!

She took it to the back of the hall and gathered several colleagues around.  She opened it reverentially and together they poured over it, first one side, then the other, spreading it delicately down on the desk top.  There was a lot of frowning and puzzling and then it was over.  She came back to me, smiling sweetly, handed me back my licence and dished out the cash.  I’m going to credit my English accent and that very touching reverence that Americans seem to have for we Brits, for her failing to uphold her duties to the absolute letter of the law.

I raced back up to the top floor, resumed my reserved place, such nice people in the queue, and waited until it was my turn to hand over the fat, sweaty, wad of cash as Jacko described it in As Good As It Gets.  We were done.  We didn’t know we were done, we were just hanging around for someone to tell us what comes next.

After about an hour, when the last window had closed, out came a consular official and announced that the office was now closing for lunch and we should all go away and be back in one hour’s time, when we’d find out what came next.  What chaos.  So now, we had one hour to find somewhere to eat in downtown New York, eat, and get back, or risk not getting a visa.

So ended phase one.

Frankly, I’m not sure I have the energy for describing phase two and I’m even less sure that you, dear reader, have the appetite for it.  Suffice it to say it involved an interrogation, some game playing and a great deal of smiling and trying to be nice to people to whom I wouldn’t normally give the time of day.

Let’s leave it there.  Let’s not overlook the point of all this though.

The point is that it matters not one jot who’s running the government.  What matters is the leadership, management, training and recruitment down at the coal face and that is under the firm grip of the civil service and their unions.

If you employ muppets and don’t even try to educate them to the level of say, barely employable, put them in the control of frustrated traffic wardens and generally treat them as if you care neither about them or the people they are there to help, then this kind of crap will continue.  I doubt any government minister will ever find the will, determination or a suitable mechanism to impose change on the self-perpetuating life-force that is the civil service.  I don’t believe this is a party political issue any more than it is a national character trait.  I think it’s the way the world chose to travel and not enough people cared sufficiently to steer a different course.  How you could possibly change it now, I really don’t know.  What I do know is that it would feel really good if it looked like anyone was prepared to try.

Meanwhile, let’s acknowledge that those people at the coalface are just ordinary people like you and me who’ve had their charisma exorcised, their humour lobotomised, their empathy ostracised and, frankly, this is just the level of crap we all have to put up with.  Now go outside, away from this “hostile environment”, marvel at the world of nature and let it put a smile back on your face.  😊

Something On My Mind

Gamma1

Recap Feb 2012:
When I first suspected something was wrong, and throughout the whole of that year to eighteen months that I did nothing about it, I was convinced that what I had was oesophageal cancer. I think this was because Christopher Hitchens was suffering exactly this. The Hitch is something of a hero of mine, is, was. The main problem that makes oesophageal a cancer with an appallingly low survival rate is the routinely late diagnosis. It manifests with a cough and with heartburn. Only belatedly and very much too latedly, with a difficulty in swallowing. Its main causes are, of course, smoking and drinking. Whilst I might identify with both those things in substantial measure, my indulgence was nothing as compared to the reputation The Hitch “enjoyed” for such things. He and Martin Amis and a coterie of close friends. I followed Christopher’s progress as he wrote in the vivid and eloquent style we would expect of such a brilliant writer, orator and raconteur. It frightened and saddened me in equal measure. I knew these were amongst the last words he would ever write and still I didn’t act, I didn’t get myself to the doctor, I didn’t stop smoking, I awoke every night with a cough and most days I would have a flash of a memory that I needed to go and get this checked out. Something, work, always intervened and when it didn’t, the thought of the obstacle race that is the appointment system with our local GP surgery put paid to any further deliberation. Finally, I presented myself there specifically citing my fear of a cancer of the oesophageal kind, only to have the notion politely rubbished by my lady doctor who told me it sounded much more likely to be one of the pulmonary kind. I pointed out that this could be one of the reasons by which the other goes undiagnosed so frequently but she insisted, booked me a chest X-ray and the rest, as they say, is history. Sort of.

Letter to my friends, April 2013:
Last autumn, 2012, given the removal of half of my right lung, I felt and was advised that a flu jab would be a wise precaution and, whilst I was at it, why not one for pneumonia too – I’d only recently discovered from my brother that there was such a thing. I took them both. Last year, 2012 was the wettest year in history, apparently, a fertile breeding ground for such viruses and the last third of last year and the first third of this have been a thoroughly grey, cold and depressing period during which so many people around me have suffered colds, flus and other unspecified bugs and illnesses. I have escaped them all but there has been a feeling throughout that I have been under their attack but with only the mildest of symptoms. As if true to ones desire to be healthy, my own incredible immune system, with a little help from the vaccines perhaps, we’re working overtime and succeeding in keeping me safe and sparing me from a full blown attack.

It was during this first quarter, January maybe, February and March certainly of 2013, that I found myself with a light cough, a cough that didn’t seem to be going away. I remember being conscious of the fact that since my last CT scan in January the next one was not until mid-June and I had wondered, at the time I was given that appointment, why there was a five month gap rather than the usual three. That alone was a concern but now with this cough I was not comfortable with waiting till then. My wife had been talking about us going to New York in June and so there was a potential conflict of timing to consider too. I remember well Conrad, my best friend, life saver and Oncologist, telling me in no uncertain terms that there is no such thing as a smokers cough, as such. There are serious physiological conditions that are caused by smoking, such as emphysema and cancer, but nothing as benign as a “smoker’s cough”. If it persists for three weeks or more, and there’s no obvious reason why, get it checked out. Not long after that advice, the government launched a TV advertising campaign saying pretty much exactly that and, I hope, it has led to many more people getting early diagnosis of serious and curable diseases. I let it go for two months. It was a light cough. I might cough once or twice during the day, always at least once at night, perhaps just one cough, perhaps two, never more. It felt as if it came from a tickle at the back of my throat. It didn’t feel like it came from my lungs but of course, all coughs are stimulated by the lungs and their need for immediate oxygen. Was this the bad joke? I had half my lung removed and now, now, I get what I dreaded, the oesophageal kind.

Then the cough stopped. A couple or three weeks pass and no cough. The thought was still nagging me though, as was the longer than normal wait for the scan. I decided to contact Linda in Radiology. She had always been very helpful, it was she I had first spoken to when I called on that Monday morning and said, “I have lung cancer, I need a PET/CT and an appointment with a first class consultant.” Two hours later and I had appointments for both for the day after next. She was efficiency itself and kind, caring and considerate with it.

I sent her an email but received an out of office reply that she was away till the following Monday. When I contacted her the following week I shared my fears with her and asked if it was possible to bring my scan appointment forward and whether we could include my throat in this same scan. Well, the throat is in the head, don’t you know, and so when you want the throat you kinda get everything else that’s in the head too, which thus seems to make it be referred to as a “brain scan”. In order to get Conrad to agree a brain scan, Linda invented a few symptoms of her own making based, presumably, on long experience.

Thus when I next met with Conrad, coming directly from the CT, he started asking me about my states of confusion (!) and headaches….I played them down without denying them entirely, very consciously not wanting to drop Linda into what I felt could be a whole heap of trouble for her whilst, at the same time, not wanting Conrad to be misled into thinking I really did have some kind of brain tumour or dementia, or something. I just wanted to know if my throat was okay but I was having difficulty steering him away from his topic.

I was vaguely aware of the image he had on his computer screen but I wasn’t paying much attention to it, other than to note that it clearly wasn’t of my lungs, nor a profile of my head showing the throat, it was obviously of a brain. No reason to suspect that it was of my brain and, if it was, that would be no surprise given that’s what I’d just had a scan of, amongst other things, but unusual compared to previous visits and thus, once again, all the more reason why it might be the first thing he looked at.

It had seriously never crossed my mind, not even for a fleeting flight of fancy that there would be the slightest thing wrong with one of the finest brains I knew and one to which I was singularly attached. “So, how are my lungs?” “You’re lungs are fine, Robin, excellent in fact.” Great news, I like excellent, “and my throat, my oesophagus?” “That’s fine too, also excellent.” Well that was that then. Relieved, I settled back momentarily, preparing to move onto the phase where we discuss things generally, talk about my progress and my next appointment and Conrad would ask after my wife and how things were in general… This relief was shattered, in the most abrupt way ever, when Conrad adjusted the image on the screen, bringing into stark focus a white globe at the centre of my brain that didn’t look as if it belonged there.

I’m used to looking for white and black things amongst the sea of grey that makes a typical monochrome scan. Not all are things to worry about but all things to worry about are black or white and usually white. As he moved the images on the screen with his mouse, he was talking…. “Unfortunately”, I heard…and “tumour”, I heard that too. It appeared that a random, stray, single cell from my carcinoma had travelled up to my brain where it found itself a safe and fertile home, nestled between the two lobes of said brain, with space to grow, a cosy incubating climate and had thus multiplied into a tight spherical ball of cells twenty one millimetres in diameter. Three quarters of an inch. A large marble – but a lot less fun than a marble.

It clearly wasn’t sitting neatly on the surface, it was just about as deep as a tumour could get before it starts coming out the other side. I had an instant mental image of a surgeon, deftly paring back the squidgy substance of my brain mass and delving down with both hands in an attempt to locate and separate and extract this hideous invading creature that threatened me so viscerally. I was overcome with a revulsion at my own mental images of brain surgery, gleaned from TV documentaries and an over active imagination. Simultaneously I’m trying to cope with a level of shock and surprise, greater than anything I’ve experienced since the beginning of round one of this whole, just last year. No one ever mentioned a tumour in the brain, that was never part of the risk calculation. It’s only been discovered now because of some white lies that were told, in order to get the hoped-for “clear” diagnosis for my throat. How could it be that the thing we invented turned out to be the one real thing to worry about? It was almost as if we had made this happen. I found myself wanting to say to Conrad, “no, you don’t understand, I don’t actually have any symptoms, I don’t have a cancer in my brain, we just invented all that to get you to authorise the throat scan…you must have made a mistake!”.

No mistake. Irony, maybe, in sack loads, a twisted turn of fate, a sick joke, the tables turned but no mistake. You pretended you got it, now you’ve got it. That’s how it seemed. Turned around though, what a stroke of luck that I suspected something, albeit the wrong thing. That I brought forward the scan by two whole months, that Linda knew the magic symptoms to promote to get my head included and that she was willing to stick her neck out to help me. Without that, the tumour would have grown to a larger size, possibly larger than is comfortably operable, before we knew it was there and probably would only then be investigated when it had started to generate symptoms – currently (at time of writing) I am entirely non-symptomatic. Left longer it might spread, metastasise and make the whole thing a much greater threat than it is. Once again, in the midst of the worst catastrophe of my life to date, I feel lucky.

Conrad did use the word a lot, “lucky”. It’s always a difficult word to swallow in these situations but never more so when you’re deep in the throes of trying to take in the enormity of the thing you are just starting to get your head around. Puns like that come up all the time with no help from me. Another phrase keeps prefixing my words in the form of a pun, “I’ve got something on my mind…”

He also used words like operable, a word I really didn’t want to hear, it just stimulated all those fearful images of surgery. I know it’s meant to be reassuring but all I want to hear is, “don’t worry, when you wake up all of this will be over and things will be the way they were before this latest episode of the nightmare”. He talked of “convalescence”, the words “months” and “several”, of “therapy” as in, what?, I may need help with thinking after surgery? Help with talking, moving?…oh my god! I am my brain, that’s me, that’s what I do, that’s what I am. Take the body, I don’t care, it’s just a conveyance but for fuck’s sake don’t start screwing with my brain, with me, with the essence of me…

Oh and, “you’ll have to hand in your driving licence….and you may never get it back again….”

I told Conrad he was no longer my favourite person and that he might be coming off my Christmas list this year. He gave me a form to set up an MRI, when I was ready, so that we could double-check whether we were dealing with, as we hoped, a single, “stable” metastasis or whether it had friends and relations to keep it company. I hoped very much that it was a lonely sad and solitary little fucker. Friends and relations, of the tumour that is, are never good news in situations like this.

Given that I really hadn’t been expecting anything at all to come of this consult, it hadn’t seemed like a bad idea, given that it was scheduled for 7pm, to arrange dinner at my very favourite restaurant with my wife and my dear friend and colleague, Terry from Sydney, who was with me for the week. It now seemed like a very bad idea. Do I tell them at the restaurant and ruin the evening and more importantly, the meal? My wife would be inconsolable. Terry would be upset and embarrassed and we’d all miss out on a fabulous meal. On the other hand, just shut the fuck up, pretend it never happened, report that my lungs and throat are “excellent” and we have a great story to back up a celebration meal. What a truly fabulous and doubly memorable meal for lots of right reasons (the endless plates of delicious food and the glorious Amarone wine) as well as for the somewhat notable occasion. We had a great time.

My wife travelled back on a different train (no it wasn’t something I said) so I was able to talk to Terry alone and share my story, as well as preparing him for the fallout that was coming when my wife found out, the next day. “Ri, I have something I need to get off my mind…” I told you, these puns just keep tumbling out.

So, on Monday morning Conrad will get the MRI results from this morning and he’ll call me with the good news – lucky, remember? Then we can discuss the consultant I’ve tracked down and see if he has any better recommendation but most importantly I need to make an appointment with one or another (essentially anyone at all as long as he is the very best in the entire known universe) by Weds(ish). This is not like the previous thing, time is of even greater essence. Get ’em while they’re young!

Meanwhile there’s lots to organise, lots to delegate, lots to find out about, lots to put in place, lots of very special people to talk to. This is part of all that and I hope it doesn’t fill you with quite the fear and dread I’ve gone through, it’s in hand, it’s back to the level of a tough problem with a series of possible solutions and that’s what I do, I solve problems. So here we go again, one more time.

Love you all, sorry to do this to you, I shouldn’t have ever smoked, I know, but I’m through beating myself up for it, we all have our vices and our regrets, this one is mine. I may be out of action for a while, travel might also be a little restricted, if I’ve got an appointment scheduled with you I might have to let you down, I’m just not in control of my own diary right now. I know you’ll forgive me. I forgive me. Ri is the one finding this hard right now and she’s going to need lots of help so it would really help me if friends could do what they can to help her, that’s the one thing I’d really appreciate. Thanks to everyone.

A week later, another letter:
So it turns out that I’m something of a fraud, a charlatan, apparently, a doom and gloom monger of the first order.

Not that it isn’t the case that a rather confused lung carcinoma thinks it’s ok to take up residence in the very cosy, protected and desirable residence between the left and right sides of my brain – a communication conduit that not everyone believes is as free and fluid as it might be (but what do they know) – it turns out that the little critter doesn’t know what we’ve been up to since his ancestors evolved all those years ago. It always fascinated me that any living thing would think there was any merit in basing a lifestyle that’s so totally and utterly dependent on the very host that you are hell-bent on killing, thus ensuring one’s own demise and, ergo, that of what would otherwise become one’s offspring. However, it’s always been a rather comforting thought too, in a very weird and tangled way it must be said.

What cancer cells don’t get is that we have nerds. We’ve had nerds for a long time but in recent centuries we’ve learned to capture, distil and transmit that accumulated nerdiness onto subsequent generations thus giving each a leg up so that the base is raised each time and, from that base, great new truths and discoveries can be layered upon and boundaries to their potential achievements simply cease to exist. Only time, determination, curiosity and the evolution of science fiction into fact is required – together with the sustained encouragement of young, brainiac men and women who suffer the deprivation of social skills their parents might crave for them but who we know and love, or abuse, as nerds.

One such nerd was Lars Leksell (1907–1986), a Swedish physician and Professor of Neurosurgery at the Karolinska Institute in Stockholm, Sweden. He was the inventor of radiosurgery.

I’ll tell you a very “funny” story relating to Lars Leksell in a moment. Ri suggested he sounded like something out of a Superman movie, Angus proposed the baddie. You’d think, with a name like that wouldn’t you but, as it turns out, this is very much one of the good guys. Lars Leksell was one of the first to develop a stereotactic apparatus exclusively for human functional neurosurgery in 1949. Then in 1951 he developed the concept of radiosurgery and combined his idea for this stereotactic apparatus he had come up with which was dubbed the Leksell Stereotactic Frame – catchy title for an equally not catchy looking helmet that is fitted to the skull, screwed into position (with a Phillips screwdriver into the skullbone!) and resembles something one knows one has seen on countless horror/sci-fi movies even when you can’t quite name the movie itself. One of the clever things that Lars added to the concept that dates back to a British guy in 1908 was the concept of using polar coordinates. Throw in some radioactive cobalt, position the thing fairly, squarely and very securely to someone’s skull, pass the rays of that cobalt through a couple of hundred apertures (think of a colander) at exactly the right angle so that they all converge on a specific, focussed point and KABOOM!

Yep, like a fleet of StarFighters circling the rogue planet, each pointing their laser/destructor/whatever beams at the centre. The sphere first glows, then pulsates, then erupts in a blinding flash only to vanish as it’s gazillion component parts evaporate into the ether… Well, something like that anyway. I really don’t mind missing the glowing, throbbing bits – though apparently there is some of that for a while – but I’m happy to ‘pass’ on the eruption and take what actually happens, a very gradual shrinkage of the tumour as it’s now genetically re-engineered DNA turns against it, stopping it from reproducing (cell division) and thus withering and dying and being washed gradually and unceremoniously away over the next year or two…

The Leksell Gamma Knife is manufactured by Elekta Instruments AB, a Swedish company which manufactures stereotactical surgery and radiosurgery equipment, based on the inventions of Lars Leksell. It was founded by him and his son, Laurent Leksell, in 1972. These machines are now available around the world – and in the NHS – Elektra even have an office right here in Crawley, on my doorstep. Not that this has any impact on anything. What’s more important is that they have one at my lovely Cromwell Hospital, my (am I going to say this?) home from home for the last year or so. Lovely people all, I could never imagine feeling comfortable in any hospital environment but honestly, this place holds no fears for me.

I go in next week, I get calmed down, I get local anaesthetic to detract from the knowledge that I have a helmet being drilled into my skull and, yes, Ri apparently gets to take photos – I kid you not. She asked, the lovely Mr Peterson said “sure” and asked if she wanted a sound track. Then they hook me up to an MRI scanner and they do the highest possible res imaging of my tumour mapping every teensy coordinate to ensure a <mm perfect map of the thing. This is fed into the Gamma Knife computer which then targets the beams, adjusting their angle and depth, their intensity (low to avoid slicing my brain apart on the way through, ultra-high when they all converge and stop at the appropriate point). As my neurosurgeon put it, they then all put their fingers in their ears and retire to a safe place whilst I am left alone with my thoughts and my bubbling blue cobalt buddy.

So as Victor said, under the weight of my incessant questioning, at some point Robin you’re going to have to trust your surgeons. Excellent advice, folks, especially as they’re both saying exactly what I wanted to hear 😉

So, Chas, I will be at the book-signing and no that doesn’t get you off the hook of our other commitment. Courtney/Larry/Elyse/Victor/Laura/et all, yes, I’ll be in NYC in June. Courtney/Laura/Donna I won’t be in my pyjamas when you come over here – phew. Gordon, I can make it to Carolyn’s big birthday bash – better start planning my own I guess. Doug/Stella, hold that stable door open, Ri’s looking forward to checking out the horses. Trond, I’ve promised Ri a weekend in Stockholm, I think there’s someone else there now I need to go and pay homage to as well as you and your lovely family.

I promised you a funny story about the Superman bad guy, Lars Leksell. So on Weds Ri speaks to my dear, dear friend and bibliomaniac, Michael. He and I have known each other longest I think of anyone else outside my immediate family. Michael lives in Paris, he is (though he’ll be wilting from reading this) a renowned and much sought after world expert on many things bookish. For more years than either of us care to recount he has been the guy in the English Language bookshop in Paris that bibliophiles the world over beat a path to consult. He of course is much too modest for any of this hyperbole but there’s nothing stopping me singing the praises of someone I’ve known, loved and respected for most of my life. So, Ri tells Michael of the results of the first consultation on Weds where Gamma Knife was first mooted.

The following morning I get a call from Michael: “Ri told me about this Jack the Knife, bloke. I’ve got a Swedish gentleman here that would like to have a word with you.” On the line comes this wonderful older gentleman, who announces himself as one Jan Hannerz. Look him up, he hails from Department of Neurology, Karolinska Hospital, Stockholm, Sweden, the very same place that Lars Leksell supergeke made his home. Jan was a close friend and colleague of the great man and is widely published in his own right. He is an avid collector of certain literary works for which he turns to Michael to help supplement his collections. That morning, after his conversation with Ri the night before, Michael arrives at the shop and finds Jan H. waiting on the doorstep for him to open up. Now those that know me well know I am never going to read into this what many of you just might and, anyway, what difference did it make but, you can’t shy away from the fact that sometimes coincidences can be funny old things…

Like I said, I do feel a bit of a fraud and I apologise to all of you for obliging to say all those nice things about me when I’m not even going to die anymore and, better yet, I will not be undergoing the greatest horror of my life and have someone delving around in my very private grey places. Don’t worry, I won’t hold them against any of you. You can retract immediately, I’ll pretend like you never said a word as long as you do the same and we can all go back to being absolutely terrible about staying in touch with each other – until one of us needs to and then, I promise, I’ll be there.

Mandy, we’ll have that seven hour lunch, Barry I’ll be there at Goodwood, James I DO want my garden walls finishing after all, kids you’re stuck with me for a while yet, Peter I’ll see you when you’re over from NZ and we’ll take that tour, Deg do you still have that mid-life crisis on which to ride up and say hello or is it my turn to visit the old country in my own? Michael/Gwenola, we’ll be booking into Le Petit Café in Cayeux-sur-Mer any time soon. Ri, see, we’re going travelling, I promised…

Folks, everyone, there’s just so many I owe thanks to and I’ll try to show that by taking a little less time at work and a little more spending time with all the people whose lives and loves are most precious to me than ought else. Where’s our next night out, Steve? I know, it’s my turn to pay, and with this thing on my brain you’re never going to let me believe anything else are you? I’m going to have to take out shares in one little beauty, make a note: Cicchetti, 215 Piccadilly – to die for and to only worry about not coming back to, another time.

I have friends coming, dear, dear people, family, I have to make apologies and go prepare. I’m likely to get rather drunk but first I have to make pasta and we have to eat and talk and walk and stuff. I hope my rantings never offend anyone. Never let it be said I never had anything to say for myself.

Would you believe I have tweeted? It’s true, I confess, I supplicate, I beg forgiveness, I despise myself, I prostrate at the grail of humiliation but, hey, it’s an interesting way to get a little something off your chest now and again and, it has to be said, what harm can it do. Not much point though if the people I care about don’t listen. Just a thought.

Love to you all and most importantly, good health and happiness aplenty.

The Day Itself:
Apparently, I’m fixed, I feel perfect and two Paracetamol was all it took to get rid of the headache. There, done, sorted, what a lot of fuss over nothing.
Sorry to freak you all out. Everyone back to normal, carry on….

For those of you who enjoy the sordid detail let me prattle on. Most of this I did whilst waiting for the procedure and then when I had taken a couple of hours to rest my head afterward. Then Ri brought me in the rather fabulous bottle of Shiraz I prevailed on her to obtain and, well, that was the end of the writing. Don’t worry, I only got through half the bottle, gave the rest to one of the staff.

In the morning it really was one of those “auspicious dawn” moments. This last week or so has been the same, every day, for those of us that have been up with the sparrows, beautiful, clear, fresh, blue skies into which the slowly warming rays of milky sunshine crawls, like a small child reticent to leave the covers of a nice cosy bed, blinking and smiling as they yawn and awaken.

Yesterday was one such, perhaps warmer than the others had been or maybe it all just felt a little more heightened to me and what was on my mind. Sitting there in “Tuscany”, behind the gnarled and ancient Olive tree, surveying the comings and goings on our industrious little airport, settled deep in that glorious Sussex landscape, watching the sun glint off the eruption of fresh spring blue gum leaves on the “Great Barrier Reef”, Maisie for company and a hot cup of steaming black coffee in hand…you’d kinda figure that just about everything must be absolutely right with the world. It felt just so right, so perfect. One of those, “’tis a good day to do battle” days. Not, “tis a good day to die” but if there had been any threat of that then it would indeed have been that too.

In my head, Luke Skywalker and his buddies are gathering their belongings, refuelling their ships, checking their instruments, saying their goodbyes and generally preparing for that very battle (the one where they surround the death star and take it out) in a mood that mixes as much excitement as it does fear and, in the movie of course, romance. Yet there is romance in this reality too. The theme tune is playing on an endless loop of probably no more than twenty notes, around and around but it really helps keep me fired up.

The problem with all of this is that it buys into the concept that all you have to do to get free of cancer is to fight, to do battle, it’s always talked of in those terms and it is so wrong and so misleading and, dare I say, so potentially demeaning of those whom we describe as “losing their battle with cancer”, as if they didn’t try hard enough. There is no one more eloquent on this (or most other subjects) than our dear and departed Christopher Hitchens who wrote so brilliantly of his own tribulations along this road. This is not a fair fight. When the thing that is attacking you doesn’t care whether it lives or dies, seemingly only that you die…and has tricks up its sleeves what you can only guess at well, yes, any passing similarity to a particular group of the many deluded individuals on this planet does bear fairly stark and repulsive comparison. As we’ve always been brought up to understand, we on this side of the Atlantic, they only have to get lucky once, we have to be lucky all the time. It’s the same thing. Cancer is nature’s terrorism.

So when I think in these terms it’s only in order to give it some level of scale to which an individual human being can aspire to understand. The only real battle taking place is between science and nature and that’s a singularly impressive battle in which, it must be said, science has been making incredible progress. Our scientists are our new warriors. Their weapons are computers and technology and an ever greater understanding of the biology of which we are all comprised. It will be a younger generation than mine that will really be able to get their head around where we are heading with this. That’s how it works, folks. Each generation raises that level of knowledge to be the starting point for the next, a launch pad to propel on to greater things, each one built on the previous achievements, just exponentially faster, further, deeper each time.

As I’ve said before, let’s celebrate the nerds, revere them, encourage them, set them on pedestals, tear down the old warrior statues and erect new ones. In *this* brave new world, these are the men and women that will steer mankind to the great things which lay before it and in which each of us plays such an individually insignificant role that it will forever stimulate the eternal “why are we here” question that I’m afraid betrays the arrogance of human self. All I hope for is that we reach the point of at least a basic human understanding across our small fragment of spinning rock before too much more suffering (beyond the last few thousand years) can be perpetrated in the names of the charlatans, the fairy worshipping establishment, the voodoo maniacs that we politely call “the devout”, “the faithful”, “churchgoers” and a million other sops to the delusional pedlars of poisonous myth and fear that we not only tolerate, for reasons that elude me, but go out of our way to facilitate with the politically correct cry of “religious freedom”. Where’s the religious or any other kind of freedom of a small boy in a catholic children’s home? Where’s the safety and security he deserves, subjugated by fear and depravity, that’s where. What science is there for Africans told that Condoms are the devils work and AIDS is an imaginary affliction, that Anti-retrovirals are an American plot to sterilise their children, and all promulgated in the name of some fear-mongering, fairy-preaching arse-wipes? Where’s the religious freedom for that of a wretched child born into the slums of Palestine and abused with the twin assault of Jewish/Islamic rhetoric with which he and his grandchildren will be forever imbued and for which the rest of us will continue to pay, over and over again?

When I was an idealistic teenager, all of this was going to be gone by now. Hey, it was going to be gone that year or the next, certainly by the one after that. Change wasn’t just coming, change was a monster rolling stone rushing downhill making all things old and hateful scatter in its path or be flattened in its wake…we even had our own music to accompany this revolutionary army of upheaval. That fire, that impulsivity, that derision, that aspiration, that motivation it really can light a new path but, and it was ever thus I’m sure, wise, sage and rather less exciting influences will always come to bear. Nature it seems likes equilibrium and works very hard to smooth over rough seas, calming and massaging into something more manageable, slower, less fractious, plodding even. I still rail against such limitations on thought, change, advancement but I do so in a far more sanguine and very slightly more patient way. If I can’t have them all gone in an instant, evaporated as effectively as my tumour, then at least I can witness the inexorable march of science and advancement pushing these voodoo ways further and further into the dark corners where they belong and who knows, hopefully, starved of light and air they just might wither and die.

There’s something quite perturbing about the number of Islamic brethren beating a path to the door of The Cromwell Hospital and the other illustrious private ones I’ve been frequenting. Don’t get me wrong, they have the money, they think nothing of hoping on a plane to go and get the best and why shouldn’t they. Their money helps facilitate these places for the rest of us, I have no philosophical issues here….except….you didn’t quite trust your Allah did you? Figured he might need a helping hand? Squatting there in the sand and playing with your worry beads while bobbing forward and back and mumbling just wasn’t going to cut it now was it? Nope, just in case, lets grab a plane, grease someone’s sweaty palm with a pile of filthy Luca and let’s see if that helps. Well, hell yes it does and I’m glad you figured that one out. So how come your three wives are sitting here silently and diligently covered from head to toe, just waiting for you to come out of the consultation so they can silently and, as if on command, stand and follow obediently three paces behind in some pre-ordained hierarchical sequence. Give me a fscking break!

Sorry, this was all supposed to be about me, my cancer and I. Somehow though as soon as I get onto that subject and combine it with the science that “fixed me”, you’ll appreciate how inseparable these things become for me. I don’t want people going around thanking Santa for their recovery, I want them thanking the incredible scientists and doctors and technicians and geeks and nerds that made it happen. Thank the incredible essence which is nature, energy, life, the universe, thank anything you darn well please, there are so many people and things that exist that you can thank, there’s absolutely no point in inventing any that don’t and then thanking them – how disrespectful can you get? Heaven’s above, I love all things Norse Mythology-wise, Thor was my hero and given my current penchant for all things Nordic, and particularly Swedish, I could very easily be thinking nice thoughts of Thor right now but guys, I never fell into the trap of thinking it was anything other than a myth. I do live in reality and I know that despite the wonderful and romantic notion that is Thor, neither he nor his father Odin or any of the greatly extended family had the slightest hand in my miraculous treatment – except that it’s highly likely that Lars Leksell also worshipped Thor – as a young boy’s hero – just as I did and who knows if that inspired him to greatness. There’s nothing wrong with heroes, we just have to know what heroes are and what they’re not and maintain a perspective. I don’t care if a bunch of people want to start a Thor appreciation society, just so long as they don’t get given government funding to start indoctrinating young children into the ways of Asgard, describing to them how to navigate the rainbow bridge and to watch out for the evil Loki, who was never really evil in the first place, just a bit pissed at his old man for telling him off and chucking him out of the house. So long as they don’t get given honorary seats in parliament and asked to pass laws that the rest of us have to obey…..am I making my point here, people?

So, if it helps, fine, dress up your own “battle with cancer” or any other demon you might be facing in the finery of ancient Norse mythological garb and enact the scenes of Asgardian splendiferousness (for me it was Starwars) if that’s what floats your boat and helps you deal with the sheer bloody terror that is this and many similarly powerful afflictions that we mortals are prone to. Who the hell would judge you for that. Christ, go grab a little religion if it really helps, just keep it to yourself, OK? Don’t foist it on small children mentally or sexually, don’t explode it in the faces of unsuspecting passers-by, don’t dress it up in fancy garb and dump it on innocent populations under the pornographic description of “shock and awe”. Whatever you have to do to get through, that’s fine but don’t forget to say thank you to the ones who will really get you through this, the ones who fought against all the same obstacles that get thrown at all of us and who made it through to become fine nurses, doctors, surgeons, scientists, mathematicians and the rest. These people are heroes, they are human beings, they are the pinnacle of life as we know it.

Sasha, my lovely gay Russian (but born and brought up in Ukraine) nurse/technician/physicist guide through my Gamma Knife process was just perfect. A pianist, a sensitive guy, he knew his stuff and he knew how people feel in this strange and frightening environment. He was calm, efficient, kind, patient and had a sense of humour. Renee was from Zimbabwe, soft and gentle, a woman born to be a nurse. David Peterson, my consultant, now he was something else. Six foot six or something, true Viking heritage went with the name as did a wicked sense of humour so engaging that you hardly had time to think what was actually going on and, of course, that’s what he was so wonderfully practiced at. Yes, they forgot my valium because he never really figured I’d need it and so ten minutes, less, before the process began I got given my tablet. I’d kinda expected that’s what the Cannula was for, that would have taken effect in seconds but no, ten minutes for a pill ain’t doing nothing and so when the Lidocaine went in, well you knew it was going in. Not sharp like a needle, because it’s anaesthetising as it travels it feels more like a quarter inch thick rod being inserted into your skull. It’s not exactly painful, there’s no sharp prick or stinging pain, it’s just blunt, solid, a bit like pushing an apple corer into a potato – or indeed an apple. Anyway, it was done in no time, one, two, three, four. All done. At that point I kinda knew the worst was over but I also knew that I was about to have four bolts screwed into my skull. I was pretty convinced already that I wasn’t going to feel it but that’s like the dentist isn’t it, (only worse) you know you’re not going to feel any pain (well I knew that once I discovered private dentistry forty years ago) but that doesn’t stop you feeling all the vibrations and the grinding and all the other horrible things that go on even when your nerves have been sent to detention for making too much noise….

…and then it was happening, screwdrivers were out, a screw was dropped onto my lap at one point, turns were being turned, lots of turns, things tightened as the separate floating plates that make up one’s skull were brought together into a proximity they were not truly designed to experience and at this point it was clear they were in a mood to complain but against a force that they were powerless to resist, they fairly quickly adopted an air of resignation and I was pleasantly surprised at how little fuss they made and how quickly they relented. Now it was all about the weight, the weight of this heavy Perspex helmet that sat onto the lightweight frame that’s made of plastic and aluminium (nonferrous so it doesn’t become a missile when you’re put through an MRI scanner!). Then that comes off and suddenly I feel like a ten ton weight has been lifted and this thing is now a part of me, like some ugly hat-stand waiting for me to try on the latest thing for the dapper man about town….I started to think of other uses for it, too. Could I hang myself from a door post to give my back the traction it might need if I slipped a disk? I’ve never had a slipped disk so quickly decided that wasn’t something I needed and as it wasn’t going to help me to hang upside down like a bat, I ran out of useful ideas – let me know if you think of any.

Next I get a different shaped hat, this one with a big point in the top, a sort of cross between Kaiser Wilhelm’s famous infantry helmet and Dan Dare’s space helmet….this was to make sure that my head and frame would dock into the mother ship correctly. Then I got the classic upturned goldfish bowl style through which many holes have been drilled and into which Sasha plunged a stick – probably has a technical term but to you and I it was a stick – as he rattles off a series of letters and numbers indicating the hole in question together with a distance in millimetres which Renee plotted almost as fast as he could recite them. And then that one was off too and I was left with my lightweight frame and Ri’s camera…..in my face…someone had to do it, for posterity I guess. A caution from Renee not to broadcast these on the Internet – something about people and forming part of my medical records and I have no idea what the problem was, anyway, I tweeted the ones I felt I could having ensured that no one was identifiable.

It’s time to get ready for the MRI and I’m wheeled outside to await transfer through and there to greet me are Linda and Alina from my A-team who’ve heard I was downstairs and have come down to say hi and wish me good things – where else would you get that, in a hospital, I ask you, this is why I wanted to be treated here….what lovely people.

…and it’s off to the MRI, Aretha Franklin my choice of music – one I instantly regretted as my body tried to move quite involuntarily (and voluntarily) to the music whilst my head was locked down (via the frame) . I needn’t have worried, the overarching scream of an MRI magnet is never going to be outdone by loud music, never in a million years. It’s not an entirely unpleasant sound, something rather comforting about it but not in a “I’ll just doze off for a bit” way as you get in a CT or a PET scanner, more like going clubbing and trying to sit quietly in a corner to hold a conversation that you know is going to be very hard work.

…and then it’s coffee time…well. Sasha at this point, what can I tell you. No, you can’t make instant coffee any more palatable just by making it four times stronger than normal. It just tastes like really strong black instant coffee – and that’s without the straw through which I had to drink it. So Ri heads off and gets some decent stuff. I swear he was mortally offended when he returned and spotted the Costa cup….with the straw in it, like it could only have been mine….

…and then the results are in (it IS just the one tumour, friendless, lonely) and the planning is done, thirty-eight minutes will be the duration of the treatment, and off I go to the Gamma Knife room. I’m laid down and bolted in. They all run out with their fingers in their ears (Ri included) (but not the fingers in ears bit, I made that up) and I’m left on my own so that only I get the Blue Cobalt radioactive waves through any part of my anatomy and, boy, am I about to get one huge dose of it. The music rolls, as does the table I’m attached to as the doors behind my head start to open….suddenly the music changes “whoops, wrong one” he calls through the intercom…. Hoping he’s slightly more adept with computer programmes and technology generally that he is with a basic CD player, I tell myself to relax as Holst’s Planets starts to play…and I pass inside the machine and my head docks with the mother ship.

Is it working? Has it started? I didn’t think to ask even though I could have done as I’m all miked up, I just didn’t think to. It must have been twenty minutes later I’m thinking, “I really hope it has started or I’ve still got thirty-eight minutes to go…” and then it was all done. I’d felt nothing. I know you might ask, why would I, I mean you don’t feel anything when you have a chest X-ray or one of your broken arm and hey, that’s just radiation, right? Those people at Chernobl didn’t feel anything at the time, did they, that doesn’t mean it didn’t kill them and deform their children. Radiation is spooky stuff, powerful and spooky.

The whole theory of Gamma Knife is that they deliver up to two hundred beams of low dose radiation so that it doesn’t scythe through healthy brain cells like standard radiation does, killing as it goes. It’s only at the point of conflagrance that the doses combine and deliver a dose that can warp dna into something that prevents the cells from division and reproduction. Its measured in “gray” (Gy) after Louis Harold Gray (1905–1965). One gray is the absorption of one joule of energy, in the form of ionizing radiation, per kilogram of matter. For X-rays and gamma rays, these are the same units as the sievert (Sv). For alpha particles one gray is twenty sievert. The Sievert, which has the same dimensions as the gray is a measure of the potential for damage to human tissue. A whole-body exposure to 5 or more gray of high-energy radiation at one time usually leads to death within 14 days. Since gray are such large amounts of radiation, medical use of radiation is typically measured in milligray (mGy). My typical routine CT scan of the abdomen and the pelvis is 30 mGy. For this procedure my dose, at the point of conflagration, measured twenty gray, 20,000 mGy. Four times the amount required to kill me in 14 days. Give me a call in a couple of weeks just in case, would you?

So I’m taken back to the frame fitting room where a great many turns of a screwdriver ensue, as I’m wondering whether or not the Lidocaine is still working. It was. I’m taken back to my room in a wheelchair deftly negotiating lifts, corridors and the like and then I note that the headache is well under way. A couple of Paracetamol appear, really? Paracetamol? Something more special, more potent surely? Half an hour later and I have no headache. It’s never returned and I’ve had no further medication – other than the dark red, beautifully crafted anti-carcinogenic kind with rich berry aroma…

I lay down for a couple of hours, I got up and published my Twitter stuff, answered some emails, ate a hearty supper and polished off a couple of glasses of that lovely Shiraz that Ri brought me. An overnight stay, an equally hearty breakfast and we’re heading back on the train home feeling very, very odd. Odd. Odd because I felt nothing. I was a little tired, it’s been a stressful couple of weeks, I’ve not been sleeping much because of the steroids. I’ve been rushing around putting lots of things in place. I’m tired but I feel relaxed, I feel fine, I feel like I’ve made a ridiculous fuss over nothing. Once upon a time I had a tumour in my brain that was going to kill me and, if it didn’t, the process of relieving me of it just might or worse, it might not kill me but leave me something less than I once was. Now, I still have a tumour, a lung cancer tumour in my brain but now I know it’s not getting any bigger, it’s probably already started getting smaller as it struggles to divide and reproduce and finds it’s lost the ability to. Does it wonder why? Does it know that it’s not growing anymore? I can’t see it getting smaller, I won’t until I have another scan in a couple of months or so but I know that it is because that’s what the Gamma Knife is for, that’s what it does, and it does it very well, very effectively and with a long history of success.

So that’s it then. Once upon a time I had a terrible fear of something none of us wants to imagine. Now, I’m fixed. Well, kind of, anyway. For the moment at least. I have people around me who want me to be aware that this is not quite the case. I have cancer but at the moment it isn’t affecting me and, if all goes according to plan, I may one day be free of it and, then again, I might not. That’s not as frightening a prospect as it once might have been. There are lots of people out there who are living with cancer, some of them are receiving this email. We share something in common, we have genes that make us particularly susceptible. Some of us smoked, some didn’t. Some of us ate healthily, some didn’t. You don’t get cancer because you’re bad, you get it because you’re human and because you’re unlucky and sometimes because you tilted the odds too far in its favour. It’s the one we all fear but how irrational is that? There are so many things that can kill us and that’s not counting the other human beings we share this journey with. From bugs to motor vehicles, from dangerous sports to working too hard, from eating the wrong things to being in the wrong place at the wrong time. Many of these come without warning, many of them accompanied by extreme malaise of body, soul and mind. We are human, we are mortal and we always will be, that’s as it should be. What do we learn?

Well, we have to stop worrying about what might happen, there will be plenty that actually does happen that we can do all the worrying we need to. We have to stop yearning over quantity and start making use of the time that we actually have. I have no desire to prolong my life for the sake of it, if I can’t think of useful ways to fill every waking minute then I’ve no use for it. I may not be inventing Gamma Knife machines, I may not be discovering quantum physics or something that hasn’t already been discovered. I would like to think that I can add a little something to the lives of some of the people around me, little things that raise their own personal starting threshold, young people particularly, someone to impart something of what I’ve learned. Pass it on. If I am still doing that then there is a reason for me to be here. When I start just robbing the planet of excess oxygen, well, there’s really not much point beyond that is there? Sure it’s nice to fill the time we’re here in a way that is pleasurable and if it’s not harming others then sod it, enjoy but when it comes to that “why am I here” question, what are you going to say?

Did you do everything you could to leave a little something behind? No? I think you may be short-selling yourself. And no, I don’t mean did you pay your taxes. We carry people in our hearts, even when we’re not aware of it. We learn little things from our friends and acquaintances that we’re not always conscious of. We are one organism, no matter how disparate we seem, one universe, one set of atoms with never another one to be created, just the same ones rearranged into different structures, different living and inanimate things. Ancient peoples knew something of this, they revered the earth, rocks, trees, animals, air, water and every other elemental thing with equal respect – how did they know all this without our science. How did my brain know to drag my sorry arse off to a scan where no scan should have been necessary. There’s a lot we don’t understand and I’m not about to pretend I have any answers. One day I sat in my dear friend’s little garden. I was trying to explain something, something quintessential. I pointed to the profusion of tiny yellow flowers that were romping around everywhere as an example of just how similar we all are. My friend pointed out that if I looked closely, I’d find that each and every one was just a little bit different, each one an individual in its own right. Yes, I agreed, that’s an important observation but here’s the other way of looking at it. They share so much more in common with each other than the tiny little bit by which they are different.

To all the different people in my wonderful circle of friends and acquaintances, I salute the wonderful differences that I love about you. To the common humanity from which you are all riven and with which you are imbued, I salute your glorious similarity. To all the people I don’t know, in the four corners of this planet, I’ll salute you too – just abandon the fairy stories and come over from the dark side….