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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4 thoughts on “Ode To The Hitch

  1. My father was diagnosed with Stage IV adenocarcinoma of the lung on December 23, 2013. He had never smoked. His symptoms were much the same as yours, although there was never any blood involved, and he almost died from pneumonia caused by pleural effusion caused by the cancer. After a year of various treatments, one of which caused him to spend two weeks in the hospital with a chest tube, he was declared cancer free. We spent about 3 years that way, and he’s now undergoing treatment for recurrent, metastatic lung cancer. Admittedly, the prognosis is grim, and we are all very aware of it, but seeing your story spelled out plainly brought me odd comfort. So many people look at cancer diagnoses emotionally, which I understand, but then there’s very much the ‘now what,’ and ‘living with the diagnosis’ that has to be done. This shows exactly that. Thank you.

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    1. My heart goes out to you and to your father. At least I was able to look at it pragmatically. I smoked for fifty years and they constantly told me where that would lead. I didn’t so much ignore them as just say to myself, “yeah, right, maybe”. They were right. Your dad did nothing wrong but this beast attacks anyway. That’s gotta hurt. The only advice I can give, get active, do the research, question everything and everyone. There are amazing strides made every month. Don’t take no for an answer, push, push, push. Meanwhile, let you father make the most of every single day that comes. One year after my lobectomy, I went on to discover a metastasis in my brain. If I hadn’t pushed for the scan and if I’d listened to the prognosis, I’d be dead now. Technology and geeks and persistence saved my life. I wish you all the best possible outcome but most of all, make the most of your father regardless what happens next. You only get one. xx

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      1. I appreciate that. I have very much taken on the role of “bossy daughter” from the word go. I have been to every appointment where results of any kind are involved, and anytime anything is less than 100%, the doctors at the very least hear from me, and usually see me. My dad is a chemist by trade, and we all feel fairly confident that there is some exposure to something unknown over the years (he’s worked in some really chemical latent jobs from medical research, to hazardous waste, to an oil refinery), but there is nothing that specifically links to his cancer. We are actually starting the push for a scan of his brain. It’s been a while since he’s had one, and due to some memory issues that are actually improving on the current treatment, we are pretty positive that he too has had a metastasis to the brain (as well as the adrenal gland, right kidney, right lung, lots of lymph nodes, and possibly the liver). He has two more rounds of chemo before another PET scan, and if we haven’t had a brain MRI by then, I’ll push for one. When he was originally diagnosed, he told me that he didn’t think it was his time yet, and he has made hay over the last four years. When the recurrence of the cancer was found, we had a very logical conversation of then v. now. While there will never be nothing left that he wants to do or share, he’s accomplished enough that he can sit back and enjoy all he’s done. I’m grateful for that. I wish you luck on your journey as well. Cancer is a terrible beast.

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      2. Brain metastasis from all cancers, and particularly lung cancer, are very common and you’re absolutely right to go for the MRi, especially as standard chemo doesn’t usually work because of the blood/brain barrier. I have no idea why an MRi isn’t a standard methodology in all cases. Your father is obviously very lucky to have you there batting for him. I understand exactly how he feels and empathise totally. Once you’ve dealt with the initial shock of a diagnosis and gone through the “process”, acceptance of whatever life brings thereafter is much easier. Put it another way, every extra day is like a free ride and we all know it doesn’t go on forever, nor should it but you and your father should enjoy every single one. If you ever want a sounding board/support/information don’t hesitate to shout. xx

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