Ode To The Hitch

Ode 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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#CharlieGard

CharlieGard

By luck and good fortune, I am not the parent of little Charlie Gard whose blessed little soul deserved a better break than he got, a much better break.  I said things about the NHS when this story broke, all of which I adhere to but having studied many of the court documents and judgments in the matter, there is much I would like to add.

His parents, Chris Gard and Connie Yates, have suffered more in the past year than most parents will know in a lifetime.  They are to be commended for the love and dedication they have shown to their son.  Tales of the exhaustive effort they have both put in to his care, to their research and their fight for the justice they believe Charlie deserves, are beyond the understanding of most of us.

Would that any of us had ever tested our parents in this way or been so tested by their child, they could not have done one jot more and that is absolutely as it should be.  Charlie is a part of each of them.  He shares their Chromosomes, their DNA, their “soul” if you will.  He is of them, they are him.  We are all born with certain nature-driven forces and one of those is survival, another is the protection of our children which, with the longer view, amounts to the same thing, the protection of self, of genetic reproduction.  Charlie is as much a part of them as each of their limbs but almost as crucial a part as their very heart.

That said, and whilst I pay them my very highest respect, I do believe that they were ill-advised, poorly guided and therefore, ultimately, wrong to continue the fight as long as they have.  I’m sorry if I offend anyone, that’s not my intention.  We live in a world where amazing things are possible with the benefit of modern science and medicine.  We have become, in the eyes of our ancestors, very nearly immortal.  We have conquered diseases that have laid waste to millions in history and today those things hold virtually no fear for us whatsoever.  That’s an amazing achievement.  It leads us though into a sense that everything can be cured, can be fixed, if only we can find the right doctor, the right drug, the right treatment.

When Aysha King’s parents “abducted” their own child from the NHS hospital in Southampton that intended to treat his post-operative brain tumour with whole brain radiation, I applauded them and damned the doctors – and I do so again today.  The parents had done their research.  They had read widely.  They had discovered that there were more advanced treatments, Proton Beam Radiation in this case, that had an at least equal chance of success but more significantly, a greatly reduced potential for damage to the healthy brain tissue.  The doctors were outraged and the hospital, through the auspices of the Courts, turned the parents literally into fugitives from the law, made Aysha a hostage to fortune and denied him access to privately funded treatment in another country.  The parents were ultimately successful, as was the treatment.  There are no long term guarantees but Aysha is now a five year old happily back at school with his friends this past year or so.  It’s possible this outcome could have been achieved “the NHS way”, it’s possible not.  The point is that Aysha was as healthy and whole as any little boy could be, post the surgical removal of his brain tumour.  Proton Beam therapy had a virtually zero chance of making this situation worse, whilst attempting to kill residual cancer cells to prevent their regrowth.  Whole brain radiation *without question* kills healthy brain cells.  The noticeable extent/effect of this is unknowable on one so young but the outcomes range from fine to dire.

If this was my child, I’d have done exactly the same thing but I wouldn’t have been so nice about it.  The key issues that influence my judgment in this are:

  1. The parents’ rights over the child – in the absence of any good reason to the contrary – are paramount.  They are the child.  The child is them.  If they have weird religious beliefs, if they have less than normal intelligence, if they appear to be acting irrationally in some way, perhaps suggesting mental health issues, then there is a question which the Courts may choose to examine but in all normal circumstances, they should be respected entirely.
  2. The parents were not withdrawing the child from treatment, they wanted an alternative treatment, a better, safer treatment which the NHS could not provide in the UK – though they could have paid for it in another country.
  3. Aysha was perfectly able to be transported to the appropriate place for treatment.
  4. There was no cost to the NHS who had already declined to fund it, the parents had determined to fund it themselves – which they did with help from donations after the event.
  5. Aysha had suffered no permanent damage thus far that affected his quality of life.  Given the successful outcome of the treatment, he had every possibility of living at least a substantially extended and happy life and possibly (I hope) a very full and lengthy one too.

The same cannot be said for poor little Charlie.  When the condition was eventually diagnosed in October last year, there may have been the faintest glimmer of hope.  Vanishingly small, by January such hope was gone.  It was at this point that skilled and intelligent medics would have assisted Charlie’s parents to take the right decision, a decision that was in everyone’s best interests.

By this time however, just as in the Aysha King case, relationships between doctors and parents had started to deteriorate.  Trust had been broken, lost.  I have seen such circumstances more times in my life than I care to remember.  I’ve experienced it myself, I’ve experienced it with loved ones – children, wives, mother, friends.

Trust between a patient, or parents, and the medical team treating them is paramount to ensuring the very best care and when it’s lost, it takes a very special effort to regain.  The arrogance of many in the medical profession is not limited to the NHS but it is certainly exacerbated within the statism of that organisation.  Heroes of modern medicine like the American, Atul Gawende and our very own Henry Marsh are such wonderful human beings precisely because they recognise this character in their profession but more importantly, in themselves.  It’s a very rare thing in my experience.  Doctors are much better at disguising it these days where once upon a time they didn’t even bother.

Back in the mid-seventies, at the end of that incredible summer of ’76, my wife was in hospital preparing for the birth of our first son, Marc.  We had a close friend who was a midwife, originally from the Bronx in NYC but living close by.  As was very much the feeling back then, my wife wanted to try to go through labour without the use of drugs. On the one hand she wanted to experience the entire process in full command of her senses and on the other, she was concerned (as many were at the time and many are today) with the effect of those drugs on the ‘fragile’, soon to be born foetus.  She had made me swear that, no matter what happened, unless she was in physical danger, I was not to allow her to cave in to temptation nor to allow anyone to administer drugs, unless she specifically requested them.

Sharon, our midwife, was on another call and we had to wait for her to attend.  In the meantime a succession of nurses determined to make Paula’s time as difficult as possible.  She had explained her choice to them, calmly and rationally as they looked, one to the other as if she were quite mad.  I even recall one of them making that circular motion with the forefinger beside one temple that is often used to signal someone who’s gone a bit “doolally”.  I had explained it too, but constant efforts were made not only to encourage Paula to relent but to demean her and me, for her decision.

The labour, though prolonged was not at all problematic (says the husband) from a medical perspective.  I think the comment that got to me wasn’t the nurse’s “What’s the matter, love, won’t the meanie (me)let you take the drugs?  Don’t you worry about him, we can give it to you now, all you have to do is say the word.”.  No, it was later when the arrogant little prick of a doctor said to her, as if we weren’t even present let alone three feet away, “Come on nurse, these two seem to know more about it than we do, let’s leave them to it” and promptly left the room, never to be seen again.  I kid you not.  All this simply because of Paula’s determination to give birth, drug-free.  That may sound worrying but we both knew that Sharon wasn’t far away and we were just glad to see the back of them.  This had been a day we had both looked forward to for so long and for the last two hours they seemed to have had no other objective but to make the whole process a misery.  Sharon arrived, she was a diminutive, beautiful angel of a thing with her movie-style Bronx accent, her humour, her compassion and her professional skill.

Marc Alexander, all ten pounds of him and a future PhD (yes, I’m proud) emerged crying into the beautiful September dawn and I was speechless with delight, with awe and wonder.  We hugged, we laughed, we cried, we danced, the four of us, alone in our little cell with not a doctor or nurse in sight.  It was one of the most incredible days of my life.  I would have fought a wounded tiger to save that child.  I would have picked a fight with every member of the hospital staff if I thought it necessary to defend my wife and child.  I do understand why Charlie’s parents felt the need to fight for him and why they felt as if they ended up fighting the entire world.

My tale is one but many of such tales I can tell but this one relates most closely to what Charlie’s parents had to face, albeit in comparatively benign circumstances.  Alone in a foreign world that operates in a foreign language, dependent on those with far more knowledge than you, when you and your loved ones are at their most vulnerable, ever….that’s hard, and we usually feel we have to yield, even when we don’t agree or we’re simply not sure or uncomfortable about what’s being said and done.

For those of us who question, who don’t accept that any individual has all the answers in any situation, life can become difficult.  I learned early on and I practiced this in the tale I related above, that it pays to smile, to be polite, to ask nicely, to always appear open to persuasion, to never appear absolute.  In most walks of life, it comes naturally to most of us but I’m describing something closer to grovelling.  In situations like this, it comes hard and it grates but usually it makes things easier and often achieves success, though not during Marc’s entrance into the world, it must be said.  The question is, why do we feel the need to have to put on such aires and graces?  “Do you think that….?” “Could it be…..?”  “Might it not be….?”  It’s to counter arrogance.  That simple.  It’s demeaning and disgraceful that I should feel I have to do this but if you ever needed evidence, it’s there in every NHS building: “We have a policy of zero tolerance to abuse!  You will be summarily executed if you disagree with any member of the staff”.  Well, ok, I added that last part but the implications are clear.  As a member of NHS staff, I can say, do or not do anything I like but don’t you dare react to the persistent prodding of my finger in your chest, for if you do, there’ll be hell to pay.

It’s all pervasive this sense of entitlement, of superiority, of higher knowledge.  I don’t get it from my window cleaner, I don’t get it from my taxi driver, I don’t even get it from my highly paid private doctors, so where on earth does it come from, why is it there and what do we have to do to get rid of it?  Well, it all comes down to the fact that the healthcare we receive in the NHS is “free” and we should be grateful for what we’re given.  You’ll rarely heard the words said out aloud but it’s there for all to see.

You disagree?  Many do, this indoctrination is seventy years old and backed up by centuries of cultural superiority.  It is ingrained in the British psyche and has become as deep and blind a faith as any that theistic religion has to offer.  Let me put it to you this way:  If Charlie Gard was being treated in a good private hospital and the parents had asked for him to be referred to another doctor, in another hospital, in another country, neither the hospital nor the doctors would have had a moment’s hesitation in picking up the phone and making the arrangements – all at the expense of Charlie’s parents, naturally.  The very last thing that would have crossed their minds would be to contact the lawyers and start Court proceedings.

It’s not the medicine, you understand.  Most doctors working in private practice earn their ‘basic’ living from the NHS and most of the nurses are moonlighting via the agency or were trained and practiced in the NHS – some continue to exhibit many of those tendencies in private practice.  It’s the institution, the institutionalisation of mind.  The NHS is the first Nanny of the Nanny State.  Doctor knows best, sit there patiently [sic] and be a good boy.  We might talk to you when we think we have something you might understand, impoverished, uneducated wretch that you are.

You impune their intelligence, their position, their character when you suggest, with all the palliative, cringing words at your disposal,  that there might just possibly be another way?

Another tale, it occurred a few years after the first, late seventies now.  Paula called me at work to tell me she was in extreme pain, she’d done something to her back.  She assured me she’d be fine and she’d just take some painkillers and lie down.  When I got home I discovered that she had taken to crawling on all fours as she found it that painful to stand, let alone walk.  I determined to take her to the doctor first thing in the morning, completely forgetting that it was the Easter weekend and, naturally, because no one ever gets sick outside of office hours, the surgery would be closed.  When I called I discovered that Paula’s doctor was actually pulling a shift at the local cottage hospital over the holiday and I spoke to to him there, on the phone.  He said I should bring Paula to him as he couldn’t leave the hospital and advised me that no ambulance would be available, because it was Easter, don’t you know, and this wasn’t an emergency.  I explained that we lived in a cottage that had no vehicular access and that half of the path, of some two hundred yards to the road, was up a very steep incline.  He left it to me to figure out the where’s and whyfores but he was there “if she wants to see me”.  It was obvious to me that Paula was walking nowhere and after scratching my head I remembered I had a sack barrow at home – you know, the kind of vertical trolley used in marketplaces and warehouses to move packages and, well, sacks around.

I explained the plan to Paula.  I warned that once I started up the hill I’d have to keep going and that was going to mean me taking a potentially very frightening run at the thing, to gather momentum, you understand.  She looked terrified but her existing pain was worse than her fear so she agreed.  It was painful, but she managed to bring herself upright at the front door, stand on the rung at the bottom and lean backwards when I said, ‘when’.  Thankfully, she probably weighed no more than eight stone, a teensy bit less than me at the time.  I figured, “You can do this, Robin, you can do this!”.  We set off. When I was about twenty or thirty yards from the start of the incline I wound up my pace until I was literally running, full pelt.  I wish I had been in front, so I could have seen what I was certain would be a look of abject fear on Paula’s face!  The momentum, of course, was nowhere near enough but somehow my legs and arms found hidden resources from where, I do not know, but we made it to the top of the slope and I collapsed, breathless and in considerable pain, at the roadside.

At the hospital we didn’t have to wait too long to see the doctor.  His name escapes me but, I promise, I would happily publish if it comes to mind.  He and Paula went into a room for the examination whilst I, as was more than customary at the time, sat outside.  After ten minutes the doctor came out, Paula propelling herself behind in the wheelchair she’d now been supplied with.

The doctor turned to go back into his office, with no intention whatsoever of addressing me.  “What’s the verdict, doctor?” I enquired, politely.  “I’ve told your wife”, he responded in that matter of fact voice that intones “as if it was any of your business”, “She’s slipped a disk.  There’s nothing can be done except rest.  She needs to go to bed for at least six months and do nothing strenuous for at least ten years.”  You’ll think I’m making this up, I promise you, every word may not be 100% accurate but the absolute sense and the approximate wording I have related, is precisely what he said.

Meaning it as a genuine enquiry, and in the most decorous and delicate tones, I requested his opinion as to “What do you think of the benefits of Paula being seen by an Osteopath, doctor?”.  His face reddened, instantly as if I had pressed a button that flushed blood from a bucket into his veins.  His brow furrowed, his jaw tightened and in a low voice, but leaving no room for doubt, he determined, “If she see’s an Osteopath, that’s the last she sees of me!  I’ll have nothing more to do with her”.

Now I’m not proud of this but I was young, in love with the mother of my child and in my late twenties, by which time I had come across all sorts of people in life, from angels to pompous gits like him.  “You know what, doctor” looking him straight in the eye from a very short distance, “that’s absolutely fine with me.  You can fuck right off because over my dead body will you ever come near my wife again!”.  I grabbed Paula’s wheelchair handles and pushed her straight out of the hospital without a backward glance.  It was a small hospital, very small.  I became aware that I had shouted rather louder than I intended as, in one of those movie moments, everyone around seemed to have paused in mid air, stopped whatever they were saying or doing and had fixed their gaze on us, mouths mostly agape, as I pushed doggedly forward with my own gaze fixed firmly on the door to the outside world.

It just so happens that one of our customers was an Osteopath.  It also happens that he is widely regarded, by his peers, as the best Osteopath in the whole world, that has ever lived or is ever likely to.  He’s quite special.  He is in his seventies today, still in practice, still training others who flock to be trained by him and still available to me and my family on the odd occasion I have need.  Stuart saw Paula once, in the day or so that followed.  She may have had one or two subsequent consultations.  She was immediately able to walk.  Within a week she was back at work and has, more or less, never looked back.  I say that, perhaps more glibly than I should, as we haven’t been together in twenty-five years but let’s put it this way, she didn’t go to bed rest at all, let alone for six months and she was being her normal hyperactive self within the week.  Best prognosis a doctor ever said to me and he was spot on, she never did see him again.

What does all this have to do with our young Charlie?  It’s the epitomy of the arrogance I am trying to describe.  I am also trying to contrast it with the incredibly high esteem in which I hold those doctors and practitioners whose feet, frankly, I’m not fit to wash. None of them would ever display the traits I am writing of, any more than they would eat their own flesh.

Medicine is a science but much more than that, it is an art. The Art of medicine.  Anyone with intelligence, aptitude and application can learn the science of medicine.  If you can write text books to describe it, then almost anyone could learn it.  Learning medicine is one thing, learning to be a doctor is quite another.  Much as some would like, one cannot divorce the patient from the condition and treat only the condition.  One must also treat the patient and to do that we have to communicate with them, we have to learn and understand a little about them, we have to get them on side because, quite literally, we are in this together – the patient and the doctor.  When that patient is a small, totally inarticulate, barely sentient child, the parent combines with the child in any definition of “the patient”.  It is therefore the parents with whom that skilled communication is now required and to whom it must be directed, in the clear knowledge that it is they, not the doctors, that have life-threatening decisions to make.  The doctors are there to inform, educate, advise, to guide, to coax.  In some cases, especially like this one, to use every psychological tool in their toolkit to bring the parents to a conclusion which, whilst inevitable to the doctors, is quite simply the last thing, literally the last thing, that any parent can bring themselves to.  In short there are times when to allow life to end, even to assist it indirectly, is “the right thing” to do.

When Charlie was diagnosed in October, was not the right time.  If, and I say this in full knowledge of the pressures of time and resource that exist within the NHS, some bright doctor had dedicated the time to Charlie and applied every effort to the research required, they may have come up with the potential treatment we’ve all heard so much about, at an earlier stage.  The Court documents show that Charlie’s doctors did indeed go to great lengths to consult widely and internationally.  All credit to them.  But.  As someone with long experience of such matters, that is: of what some people consider to be speed, application, diligence, devotion on the one hand and what I consider to fit that description on the other, there is a yawning chasm of difference.  In a different environment, with different people, given a different ethos, it’s just possible more could have been done.  I say all this, in the full knowledge that the only treatment available may have had little or no effect.  I make the point simply that looking into something is not what matters, it’s the vision, the speed, the diligence of that research – knowing there’s a steam train coming down the track – that makes the difference.  Do I think Charlie’s doctors at GOSH (Great Ormond Street Hospital) could have done more in this regard?  Probably not, not in that environment, with that ethos.  I don’t blame them one iota for that.  I think, given the limitations of a free-at-point-of-use, socialised,State healthcare-system, they did probably more than can reasonably be expected of them.

As I understand it though, there came a point in January, at least by March, when it was clear that a) Charlie’s condition had progressed beyond repair (brain damage) and b) No magic treatment was coming down the line to reverse that, or even to halt the progression of the disease.  At that point, Charlie became quite frankly, irrelevant.  The challenge for the doctor’s, the hospital, the “authorities” in general was to treat the parents.  To treat them with all the care and compassion possible, yes, but to treat them psychologically to bring them to the right place for them to be able to take that last, that impossible decision.  They alone now needed the full professional resources of a caring compassionate health service but as I understand it, the trust had gone.  That fragile but essential gift shared by doctor and patient, it was gone.  I cannot know how, what events or misunderstandings brought that about but I can say this with complete certainty.  It was that loss of trust that brought this whole sorry sage to the Courts, time after time.  It was that breach that caused Charlie’s parents so much agony – not to mention all those involved in Charlie’s care and let’s not forget how harrowing this must have been for both sets of lawyers and for the judge – as they fought tooth and nail to protect their offspring, convinced that GOSH was no longer working in their shared best interests.

Where trust is lost, where there is a breakdown in this precious bond, there is responsibility to apportion.  I don’t say ‘blame’ but responsibility.  If nothing else, a need to go back over the proceedings in exquisite detail, to learn the lessons, to make plans to avoid the same thing occurring in the future.  There’s a need to adopt some humility.  To ask themselves, each one of those involved, what contribution they may have made and how they can be better ‘next time’.

I can’t tell Charlie’s parents what they should or should not have done.  I know without hesitation what I would have done and I believe it would have been the best thing his parents could have done.  I would, in January, have accepted the futility of the fight, found a way to come to terms with my loss and asked the hospital to switch off the apparatus that was sustaining Charlie’s physical functions.  I say this without a scintilla of blame for Chris Gard and Connie Yates.  I’m saying what I would have done and what I wish they had done.

As for the legal process, having read extensively, I stand proud to live in a country that can demonstrate such a rigorous, compassionate, fair and cautious judicial approach to such a complex and emotional situation.  I have only praise for the judge, whose written judgments read as if they had been considered and the issues dissected by Solomon himself.  I have linked both the first judgment, gosh-v-yates-and-gard-20170411-1, dating back to the hearing in April, and the second gosh-v-gard-24072017 on 24th July.  I would like to commend the lawyers on all sides, especially those who worked pro-bono for Chris and Connie.  It’s an obligation for me to point out that without them, these parents would have had no recourse to legal aid and thus would have had to rely on their own representations.  I am not angling for taxpayers funds to be used in situations like this, any more than they already have been.  I was particularly struck by the Great Ormond Street Hospital position statement at High Court on 24 July 2017 prepared by Katie Gollop, QC on behalf of GOSH, which is deeply thoughtful and considerate, in all the circumstances.

There is no good way to end an item like this, other than to say that we all do the very best that we believe we can in this world, Charlie’s parents, lawyers, judges, doctors, nurses, all of us.  Sometimes all of that cannot save each and every precious life on this planet and we all have to be realistic about that.  In the wider context of life on Earth, we are all very small, very fleeting and very, very insignificant.  Our thoughts must be with Connie and Chris.

RIP Charlie Gard 28th July 2017