Latest medical news

Dear all,

there’s some good news to report  from yesterday’s crucial meeting with the oncologist. There has been no spread or growth of existing lesions in the lungs between the scan of April 02 and that of of 26 June. Yippee!

Today I start a trial 4-week course of a daily dose of Sunitinib (Sutent) which is designed to prevent cancer cells dividing and therefore reproducing. It can even shrink existing tumours. However it doesn’t work with everyone and some people cannot tolerate the side-effects. Assuming I can tolerate them, we will know if the medicine is  working at the next 3-month scan.

I’m impressed by both the oncologists that I am working with at Chelsea and Westminster. The lead one works closely with world-renowned colleagues at the Royal Marsden, including Professors Larkin and Gore. Her deputy is just about to be made a consultant after  completing his PhD on renal carcinoma treatments at Cambridge. So he’s fully up-to-date. Fingers crossed!

In the meantime, I am returning to some of the alternative medicine thingsI was trying, notably a modified version of the alkali diet which I suspended after the operation in order to get as much protein down as I could. Having discovered that a daily teaspoon of bicarbonate of soda alakalises the body effectively (think Eno’s liver salts as an ant-acid – pretty much the same compound), I can continue to eat chicken and eggs to my heart’s content. I think I am at last beginning to regain a little weight.

It’s now exactly 7 weeks since the operation. The wounds have healed well though I still have some stomach discomfort and can’t really lift or twist. The biggest downside remains tiredness. I’m informed that I lost 70% of my normal strength and energy as a consequence of the operation and can only expect  to regain 5% a month until I achieve a 90% recovery of former strength and energy levels by next May. So it’s going to be a long slow process; but with patience and all the support I’m getting, I’ll get there.

One of the down-sides of this loss of energy is that I can’t do the blog to the level I’d like to. Besides the last few weeks have been intensely social (as well as exhausting) owing primarily to the presence  of various brothers who have provided a great boost to morale. I’ve focused on spending my energy on seeing them and have had little to spare for other activities. When I’ve tried to write a new post, I quickly feel overwhelmed by the effort.

However, I intend to post a photographic record of the main events of the last few weeks very soon

Until then, I send you lots of xx

Further Brief Update

Dear all, I am in the middle of preparing a fairly meaty post about recent developments, particularly in the fun department. However, owing to current low energy (the result, I think, of too much of the said fun), I’m not sure when this will be ready. Later this week, I hope. So, for the moment, a  brief update on this morning’s meeting with the oncologist. For reasons which will be explained in the longer post, when it goes up, the oncologist was reassuring and fairly optimistic, within the usual constraints. I will be having further scans later this week to determine whether the spots on the lungs have grown since April 02. At a meeting next Monday 29th (the day of the prize ceremony I am supposed to be attending), we will discuss these scans and which, if any, of the ‘biological therapies’ I will be given to start things off. The oncologist appears to think I am recovering very well from the op and that my intrinsic state  of health is good. Hence much depends a) on what is disclosed by this week’s upcoming scans and b) how I respond to the ‘bts’ – which will not become clear for 3 months or so after I begin them. It’s possible they will not work on me; on the other hand, they might even shrink the lesions; or somewhere in-between ie stabilise the cancer at its present size for some time at least. So much depends on the individual case. Lots of xx Bart

June 15 Update

Dear all, as promised, here is a quick update. Quick, because there isn’t a huge deal to update.

Anna and I went to see Mr Khoubehi this afternoon. He was pleased by how quickly and well his cutting is healing, pronounced what he accomplished inside as a success and reassured me that on-going tiredness, itchy stomach etc is all par for the course this soon after major open surgery.

On the other hand, histology of the dratted kidney confirms that I have Grade 4 Cancer, the most aggressive kind (this is relative, however, because Grade 4 kc is not as aggressive as G4 lung cancer would be.) Given we knew of its migration to the lymph glands and each lung, this wasn’t a great surprise, though of course one hopes for something lesser.

So there is little to add until next Monday 22nd when we have the first meeting with the oncologist. We should then have a clearer idea of when the next, all-important, CT scan is going to be (it’s apparently too soon after the operation to do one for the moment.) In turn, we should also have a better idea of if and when the ‘biological therapies’ will commence. My sense is there won’t be any very concrete news for a few weeks more since it is apparently unlikely that I’ll start ‘biots’ unless and until it’s been established that the lungs lesions have grown etc.

Morale continues good and I am getting to spend lots of time with family and friends. People comment that I look well, even tanned – the result, no doubt, of exposing the scars to the 2 hours uv radiation we have had since June 01. Brother Ames and I had a lovely 4-day break in Broadstairs, courtesy of Pia, who lent us her cottage. Ames took the opportunity to pen further scurrilous tales of his sibling’s quirks and eccentricities. Fortunately I control what goes on this blog. There is a fab Grayson Perry show on at the Turner Gallery in Margate, well worth a day-trip down from London if you like his stuff or are interested in ‘Englishness’ – a moot subject in UKIP-land! I also sat in the very shelter where Eliot composed the first lines of what became the ‘Fire Sermon’ section of The Waste Land (On Margate Sands / I can connect / Nothing with Nothing.’ A perfect riposte to King Lear’s claim that: ‘Nothing will come of Nothing.’ (not sure if I’ve rendered the caps correctly, but this isn’t going to be marked).

Broadstairs swell: lashed to the mast :-)
Broadstairs swell: lashed to the mast 🙂

It’s just great to be catching up with friends again. One or two at a time is all I can manage for the moment, but I’d love to see one and all if you can give me a little notice of when / if you want to come. I can happily manage lunch / tea out round Clapham Junction; and tomorrow will be having my first evening out in more than 5 weeks at a preview at Shoreditch Town Hall which I am really looking forward to.

Finally some good news, too, about my memoir. It’s been short-listed for the PEN prize for autobiography / memoir. See, if interested,

http://www.englishpen.org/events/prizes/penackerley-prize/

That’s all for now, folks. Next Monday I hope to report not only on the next medical meeting, but Maddy’s birthday party this coming Saturday. She is very excited about becoming the same age as her daddy – four (see earlier post!). And she has begun to show an amazing capacity for tact. When Anna asked her recently if she (Anna) was getting bigger because of Luke, Maddy responded: ‘Don’t worry, Mummy, your head is the same size as before.’ 🙂

xx Bart

Ames in typical day-time pose, thinking up further scurrilous tales
Ames in typical day-time mode, exhausted by composition of further scurrilous tales

Of Brotherly Banter: Or, An unexpected extra

Dear all,

as many of you will know, my brother Ames has been here since May 21, allegedly ‘looking after me’ (he has so far, nearly 3 weeks on, made 4 cups of tea, two helpings of mashed potato and drilled a couple of holes) 🙂 Despite his ‘care,’ I am making steady, if painfully slow, progress. I am beginning to understand that the surgeon was not exaggerating when he informed me that I ‘should’ get back 90% of my strength within a year (!!) Morale remains good and I am really enjoying seeing people again, so if you fancy a visit please let me know. June is quite busy but the month of July is pretty free.

To while away his long hours of paid holiday, and ever-emulous of his younger brother’s talents, Ames has decided to turn his hand to ‘creative writing’ of a humorous kind.  I have to say that his first effort below made me laugh out loud – and not always just at him. It is good to have someone taking the piss from time to time, especially now that it is no longer excruciating to laugh.

A brief warning: the following story, based on a true incident during the Bournemouth honeymoon, may not appeal to those who don’t like the scatological (toilet) humour sometimes characteristic of those imprisoned for a term in British public schools. It is for this reason that I didn’t write about the incident in the blog. But since Ames is clearly desperately seeking an audience, I’ve agree to post his first effort. Hope you enjoy it

xx Bart

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The Turd that Turned, and other stories: by Ames Gilbert

 

Foreword and Introduction

One recent bright and sunshiny afternoon, so rare but so welcome and appreciated in Britain, a friend of Bart’s called Melanie, temporarily overcome by her better nature, came to visit him and encourage his recovery. During the banter that inevitably followed the initial greetings and how-are-you?s, some amusing tales were exchanged. Ames commented that they deserved to be written down, and maybe even compiled into a book. Anyway, here is one of them, told with admirable attention to the strict truth and a sensitivity to the audience notably lacking in the original. I should add that Bart was surprisingly reticent concerning the details of the aftermath of his coup, so I have taken the liberty of extrapolating from what is historically known; alert readers who know much of Bart will agree that this is a highly probable conclusion to how those events would probably have transpired, and will attest to their likelihood. But I digress. The watchword henceforth must be, “On, on, on!”

 

Bart was honeymooning with his new bride Anna in Bournemouth, and, being acutely and preternaturally aware of how much of his vast wealth was needlessly trickling through his fingers at his (to him, surprisingly) marvelous and luxurious hotel, decided to turn an amusing accident that occurred there to his advantage.

 

The scenario: he had been consuming large quantities of a vile-tasting wheatgrass concoction on the advice of a supposed friend, purportedly to build up his strength before his operation, and the resulting output was precisely what an intelligent observer might have predicted from just a brief survey and educated analysis of the input. Though it is troubling to relate such a tale involving a close relative, and one who is as sensitive to his social standing as I naturally shies away from acknowledging the connection, it is my duty to make clear that Bart insisted on telling every detail to his reluctant audience, exactly as follows. Despite cries of anguish from his audience (mostly along the lines of, “too much information!”—though there was a strong representation in a minor key objecting on grounds of general lack of taste), he overruled us in his usual imperious fashion (those who know him will understand all too well what I mean by that!) and insisted on minutely describing every detail, regardless of his listeners’ constitution, age, or sex. And I should warn gentle readers that the following tale does require one to be in good physical and mental condition; you should steel yourself, and if you have any doubts, or have not taken your full course of vitamins today, you should refrain—by all means, set this missive aside, and wait until you are stronger. And certainly this story is hardly suitable for young children or those of a timid or frail disposition.

Anyway, it transpired that, after a lifetime of indulgence and habitual over–stuffing, his digestive system rebelled against this latest insult, and, after each dose of wheatgrass, showed its disdain by producing a series of gassy, frothy turds with what trained scientists term, a very low specific density. That is, they floated on, and to hear him tell it (with the relish to we have become accustomed but not yet inured), almost hovered above the water in the toilet bowl. According to Bart—and who could blame anyone who knows him if they were to suspect him of some exaggeration—after numerous flushes accompanied by stern lectures and vigorous encouragement, he managed to be rid of most of them. However, and now we come to the crux, after each episode, a small, particularly lightweight specimen would somehow separate itself from its fellows, hold back, and then emerge from around the bend, float upwards, and bob there quietly on the surface.

 

I would not be in the least surprised if Bart surmised that these turds were psychologically torn between hoping not to be noticed on the one hand, and on the other, hoping to be admired for their adroitness, stealth and foamy qualities. Assuredly, having a lifetime affinity for turds and known for his intense admiration of their almost infinite variety, he would have had great empathy for their dilemma. My point is, these lone turds would have remained un-noticed by most folk. However Bart, as all who have ever met him will avow, has a genetic anomaly that presents itself as a uncontrollable predisposition to explore, both physically and mentally, areas that are of interest only to average children between one and three years old. I am forced to borrow from the pop-psychology that is all the current rage, and state in the strongest terms that I have always suspected that he never actually outgrew that stage; hence the unfortunate result of not graduating and moving on like normal children to, say, the more mature interest in the curious mating rituals of Peruvian Banana slugs, means that to this day he is almost pathologically interested in the nature, function and production of turds, snot (of any form and consistency), vomit (especially projectile), and almost any other mammalian body secretions, whether solid, liquid or gaseous (those same highly–trained scientists in this case use a very specialized and erudite term, ‘yuck’)—the more disgusting and loathsome, the better.

 

So, both malevolent fate and his lower nature decreed that he would, against all odds, in fact be present to observe the return of the first of these talented but unusually shy turds; gazing into the toilet bowl for several minutes after his efforts had borne fruit (so to speak), as was his usual custom, his interest was, shall we say, titillated and engaged, and he took due note.

When the same sequence of events repeated itself on his next visit to the bog, and then again and yet again, specialized neurons in his fertile brain cogitated for a while, gears meshed, and then there suddenly flashed up a solution to his financial worries. He could both do his notoriously abstemious wallet a favour, and perhaps at the same time hopefully both impress and entertain Anna (with her sweet and trusting nature, pliable and rendered impressionable until this moment by the romance of the circumstances and surroundings), by playing a neat trick. Accordingly, in the deepest and darkest chasms and recesses of his mind, at the very rotting, pustulous and coruscating core where nameless forces and hideous djinns no doubt dwell, he fomented his plans and laid his dastardly plot.

 

This is how he acted to accomplish those nefarious aims. He waited until a very nice but naïve Eastern European clerk, new to her job and with perhaps an incomplete command of English, was on duty at the front desk and started ragging her. He described at her in excruciating detail how the toilet failed to flush properly, catalogued the sordid results in tones of woe, and loudly demanded immediate satisfaction. But this was not all, dear reader, the worst was yet to come. Though it be against your nature: picture him sullying the pure image of his new bride of just a few days before strangers by misusing Anna’s name, claiming that she was in a sharp decline due to the shock of encountering the turds so unexpectedly, and spent her nights in fear! O unworthy brother, deficient not only in morality but even in common decency, a shameless distorter of the truth! To drag the fair name of a young bride through this mire of delinquency, to associate her forever in the minds of others with this noxious scheme! Dear reader, is this not indeed outside the Pale?

Then, if you can, bring yourself to imagine the consternation that a probably highly–strung and well brought up Czech, Slovakian, Romanian or even Bulgarian girl would experience in this situation! So now the clerk, naturally rendered anxious both by training and her own innocent desire to somehow—anyhow!—placate this strangest of customers, most probably deeply unsure about the weird customs and rituals of the barbarian English, and desperate to avoid more lurid details about Bart’s misadventures with the hotel plumbing, offered to exchange his rooms, and not only that, upgrade to the superlative luxury suite—I imagine usually reserved for visiting minor members of European royalty, poor relations of maharajas, trainers of seals, and wholesalers of Italian olives.

 

Cleaving strictly to the essence of his plan, rejecting any impulses of decency or mercy, Bart proudly relates how he disdainfully refused this magnificent offer with brusque words and concurrent passionate waving of hands, making his refusal to meet these very generous terms clear beyond any possible misunderstanding. Finally, after reducing the no doubt terrified clerk to near tears, he demanded a fifty percent discount (the greedy dog!) of the rate of his present room. Dear and gentle reader, note the absolutely amoral quality of his deceit, the ignoble depravity of his demands! Observe how he counted on the fact that the receptionist would be too distraught and overcome at this stage to point out the obvious discrepancy and logical fallacy so presented; to wit, that he had been complaining about the inadequacy of the hotel plumbing, and this supposed solution he proposed would do absolutely nothing to reduce or eliminate the problem of recalcitrant turds, regardless of whether or not they were seeking fame and fortune. No, he counted on haranguing and harassing the unfortunate woman into agreeing to his proposal by applying intolerable mental pressures, accompanied with wild gesture and protruding eye. Who could withstand this simulacrum of insanity, played to minute perfection and so completely believable?

And so evil came to Bournemouth, and thus this most unfortunate of incidents came to an unconscionable but inevitable conclusion.

 

Although I have no definite proof, it is easy to posit that so relieved would Bart have been to save these few quid that he would almost certainly have spontaneously burst into song and run around the lobby, carelessly knocking over random chairs long settled by old ladies, together with assorted tea tables and the Victorian knick-knacks so essential from time immemorial to the smooth functioning of seaside hotels from Great Yarmouth to Bognor Regis, deep in the ecstasy that only a confirmed miser who has devoted a lifetime to saving his or her pennies can truly understand and appreciate. And I bet that anyone who knows him as I do would readily agree. In fact, probably so alarmed would have been both the receptionist and manager (who would undoubtedly by this time have arrived to investigate the unseemly fracas) at this new and unexpected turn of events that only a kindly and timely intervention by Anna could have persuaded them to desist from calling the specialists from Colney Hatch to come and remove what would have been promising to be at the very least an important and lucrative long–term client, and quite possibly a permanent addition to their nationally renowned collection.

 

And, frankly, I suspect that were that so, it would have taken quite a largish sum of money, and far more than Bart had ‘saved’, to persuade the manager not to call the authorities and collect his cut. Though Bart would probably stoutly claim otherwise, I nevertheless stand by my conjecture, based as it is on a lifetime of personal and often sad and disappointing experience with the protagonist in this drama. One only has to observe his jerky movements, rapid breath, and rolling eye as he so thoroughly enjoys the telling this sordid tale to all within hearing distance, to admit the possibility that perhaps the mental strain of acquiring two PhDs (three more than strictly necessary) has left him, shall we say, a trifle unbalanced, rendering him somewhat dangerous to himself and others.

 

Afterword

Gentle readers, you will notice from the style of writing heretofore presented that I have departed from those usual strict standards of clarity and brevity that were instilled into my very psyche by my learned and experienced teachers as they tried to instill in me the an appreciation for the pure and refined essentials of the precious language we share in common. “Short, declarative sentences” was their battle cry, and it sums up the very essence of what they went through frightful efforts to impart, and I to absorb and actualize throughout my writing career. Though I fear I have departed far, very far, from this noble tradition in this work, I do however have a ready explanation. This digression, exploring as I do the most remote and arcane reaches of the language, and employing an almost–Victorian superabundance of words, sentences sometimes a lengthy paragraph in extent, suffused with florid descriptions of every hue, using ten or twenty words where one would suffice—this work, dear reader, is in fact a marked tribute to my brother Bart’s prose.

 

Allow me to explain.

I have carefully studied the various tomes he has produced and thrust upon an unsuspecting world through lo! these many years, and, using a technique known only to a few, have often fallen asleep while reading those works. Hence, as I have slipped peacefully on those occasions from consciousness to the realms of Lethe, his words and more importantly, the style of those more than abundant words, have accompanied me on my journeys. Dear reader, I know you are astute (or you would not have read so far), I know you have a manifest breadth of vision (ditto), I know you are educated and well–read (ditto), experienced in the ways of the world (ditto), and so I know intuitively that you have come to an appreciation of what the sub-conscious does; Freud himself informs us that the ensuing dreams we remember reflect and memorialize the work done by the sub-conscious to bring meaning to the events of one’s daily life, to re-order those events and accumulated adventures of the day, to catalogue and process them, to fit and integrate them into one’s total experience.

 

And so it is with the works of my brother Bartholomew. His writing style has impinged itself into my unconscious, and is holographically therein stored, exquisitely adapted and individualized so as to be ready to be applied to my own writing, whenever fancy, impulse, whim, circumstances or external directive require—as in the present case. The end result of all this is, I can now by an act of pure will direct myself at any time to be more or (rarely) less obtuse, to bring obscurity to the plainest facts, to obfuscate where the call is for clarity, to darken that which was lit, hide what was formerly plain, quench any desire for informed instruction or learning, in short to write as if I also had a PhD—or two, or had entered (heaven forefend!) the sphere of politics. Now, no matter what the subject, I can choose to befuddle audiences, apply discrete and impermeable layers of ignorance, misapprehension, or confusion to any writing. And above all, I have gained the inestimable ability to misuse and abuse long words for the sake of it, just because I can. O Bartholomew, behold your literary as well as literal brother! What majestic, overweening and pompous power I have gained!

And so, dear reader, I invite you to judge the results for yourself. If my telling of this tale has brought you pleasure and understanding, share your enlightenment and joy with all you know—they doubtless will be eternally grateful; if not, kindly hold your peace, for surely you are mistaken and will inevitably come to realize your error in the fullness of time.

Epilogue

Dear all, a short post to wrap up (Part 1 of) this blog.

After 50 posts, comprising something like 75,000 words, I am sure you’re as exhausted by the effort of reading as I have become by the effort of writing. Since leaving hospital, I’ve sometimes found the energy required to blog almost beyond me. In any case, I think the next few weeks (until I have further medical updates) are a time to live, rather than to write. So I think it’s the moment for us all to take a break…

Progress a week on from leaving hospital is steady but slow. I’m surprised by how quickly I still get wiped out by relatively easy everyday tasks. My brother Ames (the trained nurse) says it’s because my body is spending its energies on trying to heal the wounds and leaves little over for ordinary life. Nonetheless, I am steadily stepping up the amount of walking I do; and I am eating regular and increasingly substantial meals, many supplied by the very kind friends and family who’ve rallied round. The only time now that my abdomen causes real pain is when I sneeze; laughter and coughing have become quite comfortable and should get more so once the clips (stitches) come out tomorrow.

Psychologically I still experience moments not of the kind depression I felt in hospital but of a kind of greyness or flatness, the feeling that there’s nothing in the tank. Fortunately, these don’t last long and they are more than compensated for by a rising mood of confidence and optimism. I continue to greatly enjoy the company of my brother Ames, whose upbeat attitude is a constant inspiration. I have lots to look forward to, including: a few days in Broadstairs in my colleague Pia’s sea-side house; Maddy’s birthday party on 20 June; the arrival of my two other brothers, from Afghanistan (yes, you read that right) and Australia respectively in the last week of June – this will be the first time we’ve all been in the same place since 1984(!); a four day camping holiday in a Peppa Pig VW Camper-van with our friend Paul and son Sam in the first week of August, which has been booked for months; a fortnight back in St Girons in the second half of August if we can manage it; the possibility of my cancelled April research trip to Israel / Palestine being rescheduled for September and so on and so forth, all the way up to Luke’s expected arrival in late November…So I have tons to look forward to in the short term as I also continue to do my daily exercise of visualising myself at Maddy’s graduation in 18-20 years time…

This isn’t to say that I’m not facing some tricky mental challenges, most of which revolve round the great unknown – how much time I have remaining. Remember that the lower estimate on April 20 was six months, so in theory I’ve possibly already used up a sixth of my remaining time. Of course I’m going to be around longer :-), but there are practical decisions which are going to have to be made fairly imminently. If I only have a year, say, then I feel I should probably resign as planned before I fell ill (on August 31), forgo the remaining 5 months of my Leverhulme Fellowship, give up the year-long Gerda Henkel Fellowship which is supposed to follow and spend the time with family and friends, on nice holidays etc.

On the other hand, if I have 6 years, the maximum time scale mentioned by Mr Khoubehi, then I should probably defer retirement, to which Goldsmiths have in principle agreed, to take into account the period of sick leave I’ve been granted. This would allow me to complete the two Fellowships and, with them, the big book on Israel / Palestine which I have begun and made substantial progress on. This should be completed by the end of 2016 at the latest, leaving me ample time to then go back to my novel about Mandate Palestine and finish that off in turn. If I pack in everything now and later find I did indeed have 5-6 years (of course there will be at least 18), then I know I’ll be very disappointed not to have completed the academic monograph into which I’ve put so much work as well as to have enjoyed both Fellowships to the full.

Then there’s the in-between, statistically average, period of 30-40 months for people with my condition. What can I, or should I try to, accomplish in that period – if anything? Or should I just devote myself full-time to Anna, Maddy and Luke…

Before moving to a resolution of this dilemma, I will await my meeting with Mr Khoubehi on June 15; by then the histology results should be through and we’ll have a better idea of how aggressive the cancer has been / is likely to be. A few weeks further down the line from that (sometime in August), we’ll know from the next set of scans whether the lung lesions have grown and, if so, what treatments will be necessary and when and what the outcomes might be…

Updates will be provided as promised from time to time. They’ll be of two kinds. Firstly in the form of medical bulletins, beginning with my meeting with the surgeon’s team on June 15th. Secondly, I’ll update you with particularly significant highlights from daily life, for example Maddy’s 4th birthday party etc, so you can keep in touch with how we’re all doing if you’re interested…

Thanks to everyone who’s travelled this difficult journey with me, whether you’ve been in on it from the beginning or joined me later down th eline. Your support and concern, as manifested in your many comments on the blog, emails and texts, have been absolutely vital in getting me this far. There have certainly been dispiriting moments and I hope I haven’t put you through too much in recording them. However, for my own peace of mind, I’ve tried to be as honest as I can. As stated in the Home page, this sort of account only has any sort  of merit or utility if it’s warts and all.

I want to particularly thank not only my adored family, especially Anna and Maddy, and my many fabulous friends but the sometimes mysterious WordPress community which has coalesced around this blog, adding its own great support and comments. In some ways, I feel the blog hasn’t adequately expressed the debt I feel towards certain people, about whom I intended to write at greater length. Please accept my apologies if I haven’t done you proper justice. I am also going to have to forgo writing about certain topics which I’d hoped to find the opportunity to do, for example why Zionism is best understood as a form of anti-Semitism as much as anti-anti-Semitism (a topic I’m heavily invested in personally since, according to some definitions, both Anna and Maddy and Luke are Jewish.) But, given the decision to eschew politics for the moment, I’ll do this in other fora…

Contact will, I hope, be maintained in more conventional ways henceforth. In particular, I would love to start seeing people again. I think that until mid-June I probably won’t be able to meet up very far from Battersea. However, I’d love to have people over to catch up. I’m open to any suggestions for morning coffee or lunch in the vicinity of Clapham Junction and also to having people round for tea (please phone, text or email if you have any dates in mind). Other times for a visit are certainly possible (I appreciate many people have conventional jobs which restrict their movements), but at the moment my energy still dips appreciably after 7 pm and I’m trying to be in bed by 10 at the latest to give myself as much rest time as possible.

Conclusion. The last 52 days have amounted to a revolution in my life, which can never fully go back to what it was. While I certainly wish I hadn’t succumbed to kidney cancer, I also must acknowledge the huge positives which have come out of the experience. It has made my relationship with my beloved Anna more solid and trusting than ever, a development reflected in our marriage, which I am deeply happy to have at last accomplished. It has made me appreciate the tiniest aspects of Maddy’s ever-growing and more complex personality with an intensity and pleasure even greater than before April. It has given me much more insight into myself than I had before and it will continue to help me recognise what’s really important in life more clearly. It’s made me appreciate my friends to a far richer degree than before and makes me determined to take them much less for granted.

And the experience has also exposed me in a much more direct way than ever before to something which I can only call the Sublime. On the one hand, I feel I’ve looked Death in the eye, been brushed by the raven wing of Pure Abjection, and neither blinked nor flinched excessively; on the other, I’ve experienced an almost religious sense of Love in the overwhelming support I’ve received from so many people. As the New Testament would have it, the love of Christ is ‘too great to understand fully.’ While I’m not a Christian, the love I’ve been shown, not just by family and friends, but even by relative strangers, falls into the same category of awesome incomprehensibility.

If, in many ways, this has been a truly dreadful experience, it’s therefore also opened me up to new ways of seeing, understanding and feeling which I am convinced are going to help see me through to Maddy’s graduation and Luke’s coming of age. Above all, I think the experience has made me more human and made me appreciate more clearly that that is the task and trajectory we all have to embrace if we are to make the world a better place and love each other better. The corollary of that, however, is that our efforts to become more human are inhibited by the growing inhumanity we see all around us; and that in turn is why we can’t avoid politics, or at least analysis of the relations of power which decide that some categories of humanity are less human, or less worthy to be human, than ourselves (the privileged neo-liberal West and its proxies.) So while I’ve given up politics for the time being, my experience of illness has convinced me more than ever that I will have to be more engaged and activist when I am recovered enough to be so…

Thank you all from the bottom of my heart for taking the time to walk this journey with me.

With deep love and appreciation, Bart xx

23 May: Of a Narrative Denouement Worthy of Victorian Melodrama: or, ‘meet Luke Moore-Gilbert’

So here we are, folks, almost at the end of the line. In keeping with the traditional rules of narrative development, you will no doubt be expecting a suitable climax to bring the curtain down on Part 1 (and, we hope, there will only be one Part) of this blog.

I hope I can now provide this in the form of the news which I have been hinting at from time to time amongst the avalanche of events and developments since April 02. Anna is pregnant, and has been throughout this whole affair. Superstitious folk that we are, we didn’t want to tell everyone before the all-important 12-week scan, which took place this Tuesday 19 May and which has established that the little one is viable, healthy (as far as you can tell at this stage) – and a boy! We have provisionally named him Luke. Anna wants to add John in honour of her father; in which case, I’ve suggested, we should probably also add Matthew and Mark 🙂 Here is the first image of him, ghostly right hand waving hello:

Lovely Luke
Lovely Cool-hand Luke

You can easily imagine how much this has added to the drama which Anna and I have been going through / are continuing to go through, even if we haven’t been able to share the news until now. By an extraordinary twist of fate, Luke was conceived very shortly before the testicle attack which set off the whole sorry medical chain of events described in the previous 40-odd posts. Consequently, we’ve had to face / continue to face some terrible and emotionally taxing eventualities, including: that I wouldn’t / won’t live to see Luke; that I would / will be so sick again by the time he arrives that Anna will have not just new-born baby to contend with, but her partner on his last legs etc etc.

Such possibilities have been / remain neither palatable nor easy for us. However, in facing this additional and perhaps most difficult challenge, Anna has again proved a rock; not only in constantly reiterating her confidence that I will live to see Maddy’s graduation – by which time Luke will be eighteen or so – but in managing to stay composed and optimistic despite the huge extra stress which being pregnant has added to her already overflowing cup. So all the times I’ve mentioned how tired Anna seemed or was getting, it needs to be (retrospectively) borne in mind that pregnancy has been probably the major contributing factor. I hope you’ll join me in toasting an absolute star and agree that I am a very lucky man to have found such a wife…

Needless to say, we are both absolutely delighted by the prospect of Luke’s arrival in late November. It gives me another very compelling motivation to beat this wretched thing and provides another unquenchable source of optimism for the future. I am sure you will understand why we have felt unable to share this, perhaps the most exceptional, aspect of our common struggle until now; and we hope that you will join us in celebrating the perfect end to a narrative of trial and tribulation which has been so many long weeks in the making.

Here’s to Luke Moore-Gilbert!

Tuesday- Friday, May 12-22: Of scarcely being Bart, getting back to Battersea and Big sighs of relief

Thank God I’m home. I can’t express the relief I felt on the afternoon of Monday the 18th of May when Anna and my friend Cansun (see earlier post) came to pick me up from St Mary’s and delivered me back here – where Maddy soon joined us after nursery. It’s been such a tonic to see her after so many days apart. (Anna and I thought it best to spare her the experience of a hospital visit – it’s disorienting enough for grown-ups – at best, we feared, it would confuse and, at worst, terrify.)

 

Maddy was a little wary at first, seeing me slumped like a sack on the sofa, still winded by the exertion of climbing the stairs twenty minutes earlier. She knows I’ve been ill and in hospital but she’s not been sure what it means, except for further disruption in her routine. But she very quickly warmed up and I knew I was really on the mend the moment she performed the welcome home daddy routine she’d evidently been learning during my week in hospital. Imagine her sashaying across the living-room, shoulders shuffling one way, hips the other, hands spinning round each other to the front – all accompanied by lots of laughter as she sang:

‘Shik-a bam, bam, daddy,

‘Shik-a, shik-a, bam, bam.’

Then at last she fell into my arms without any constraint. Nothing so healing as a three-year-old’  cuddles and a daughter’s insistence that ‘daddy, you’re a silly-billy’ because I laughed so much, despite the excruciating toll on my stomach wounds. Worth every stab.

 

After vomiting first thing Tuesday morning, I felt progressively better physically as the day wore on. I had real pain only when I coughed or sneezed or laughed (all scrunching up my wounded abdominal muscles) and was able to start cutting back on the paracetemol I’m supposed to be taking in industrial quantities (though in my opinion, it’s largely a placebo). I was able to eat a little and often and to begin to take my old random interest in everything around me, from a book my friend Nick gave me on the Last Supper to the weather, to the new ‘smart’ t.v. which Anna’s given me as a wedding present and Maddy’s adventures at nursery.

 

On Wednesday the 20th, my brother Ames arrived from California, providing another huge boost. Somehow his very presence gives me an extra source of confidence, as if he’s reverting to the (occasionally!) protective ‘big bro’ of childhood. He’s not only very strong physically, but also emotionally, and I know that I can rely on him 100% during the ups and downs which doubtless lie in wait as my recovery continues. He’s also one of the best-informed and most left-field-thinking people I’ve ever known and I know he’s going to provide me with huge mental and intellectual stimulation, too. Indeed, our lengthy conversations are one reason that this post has been delayed

 

Despite these very positive developments, which include my first walks outside the flat and repeated negotiation of the many flights of stairs within, I still feel traumatised by my period in hospital, from 12-18 May. Sorry if what follows is tedious and self-absorbed (EGO) but I need to write it out to help me let go and move on. Thinking back to some of the things I wrote before the op makes me feel that I was somewhat self-indulgently callow about what was coming up.  I think I was partly seduced by a certain Romantic glamour in the idea of premature death, fed by knowledge of too many artists and literary characters whose lives were cut short (usually a lot shorter than mine might be). I guess the mood of much of what I wrote is encapsulated in Keats’s wonderful line from the ‘Ode to a Nightingale,’ – ‘I have been half in love with easeful Death’ – words penned when he was already sick with the TB which would carry him away. A few days in St Mary’s established quite another thematic, the protagonist’s agonised lament in Marlow’s Dr Faustus: ‘Why this is hell, nor am I out of it.’ I think St Mary’s rubbed my nose into a reality that Keats’s Romanticism manages so brilliantly to both absorb and transcend in a manner well beyond my limited powers.

 

Don’t get me wrong. I know that the operation and a spell hospital are essential steps towards giving me a fighting chance of seeing this thing off. I also know that many people have to suffer far worse than I did. And I freely acknowledge that I had some amazing people looking after me. I want to record my profoundest thanks to my surgeon’s team (an Iranian, a Jordanian Palestinian and a British Muslim woman – are you listening Nigel Farage?) and some of the nurses who helped me afterwards, especially Francis Kennedy, Christina Gomes, Jack Marchant, Tiggy and Clara. You couldn’t have done more…

 

And yet, and yet…

 

My first feelings of discomfort began with the epidural before the op. Bent over a cushion to produce the correct curvature of the back, I wanted to be sick as the long needle crunched its way through the cartilage round the spine, not once, not twice, but three times as the anaesthetist sought the best place to deliver maximum relief. The sound was like a chicken wing gristle being torn off the carcase.

 

Covered with tubes as I already was, I remember nothing after the epidural until I woke 4-5 hours later in the recovery ward at St Mary’s. The tubes had multiplied and any movement seemed to bring protesting pricks from different parts of my body, the canulae on the back of each wrist for antibiotics and saline, the ‘central line’ attached into the side of my neck which managed the pain relief, the catheter attached to my urethra, the drain tube below the stomach wounds, still removing fatty blood from the internal site of the cutting into a colostomy-type transparent bag, the oxygen tube feeding both nostrils, the tube into my spine topping up the epidural, the discomfort of the two lines of clips holding my guts together. Nothing for it but to lie completely still, only my eyes moving, trying to understand what the nurses were telling me.

 

The English Patient
The English Patient

 

I was being moved to a high dependency unit. There’d been a problem with the surgery. On opening me up, Mr Khoubehi discovered that my right kidney had become adhered to the diaphragm and lung (a process which Ames tells me could only have happened over a very long period of time.) The solution was to cut higher up than planned, partly through the diaphragm and very, very slowly, tease the kidney off the lung in order not to damage the latter. That all went fine. The problem was that cutting higher took the team beyond the band of midriff for which the epidural had been calculated to be sufficient. The consequence was the need for much higher doses of pain relief, especially the synthetic morphine equivalent, fentanyl.

 

For the first day or so, this provided a fair amount of trippy fun. I can remember joking a lot with Anna, the nurses and other patients, in-between blank periods of sleep and / or unconsciousness. The trouble began when, after a day or so, I was moved to a normal ward, where the fentanyl dosage started to make me vomit a noxious orange, extremely acid, viscous effluent, causing pains in the abdomen which even the fetanyl seemed unable to suppress and the very memory of which makes me want to gag again.

 

By this stage, I was managing my own pain relief through PCA (patient-controlled analgesia) delivery into a canula. The only solution seemed to be to cut it right down and substitute oral pain-killers of industrial strengths. These, however, made me sicker than ever, so I decided to refuse them, too, unless the pain got unbearable.

 

It was following that decision that it felt like I’d fallen off a cliff into an abyss which I soon simply couldn’t see myself climbing out of. In retrospect, I guess it was coming off all the pain-killers too quickly, without ‘stepping down’ in the usual manner. Whatever, I was afflicted with such utter feelings of worthlessness that I was often in tears. The self-loathing was compounded by further feelings of self-loathing that I was reacting so irrationally / self-indulgently, when I knew it would eventually pass. But nothing could shake the dark shadow off and Anna’s daily visits provided only temporary relief. Once she was gone, I didn’t even have the strength to do my daily visualisation exercise of seeing Maddy at her graduation ceremony, something I’d been doing for some time at Ames’s suggestion. I couldn’t find the heart even to switch on the Ipad and participate in some of the meditation exercises Sally and Gabi had introduced me to. I just lay there in a stupor of abject misery, unable to eat, immobilised, incapable of any sort of positive thought.

 

When you fall into this state, hospital’s most definitely not the place to be. A more sterile and denatured environment can hardly exist. The temperature in the ward’s kept artificially constant, day and night. Through the tinted outside windows it’s impossible to tell the weather, unless the sun is shining brightly. The lighting is on 24/7, only being dimmed, not extinguished, at night. One day I fell asleep at bout 5 in the afternoon and woke at 8.45. Convinced it was morning, I struggled upright. I almost burst into tears when I realised I’d been asleep less than four hours and the whole awful night which I thought was past in fact still lay ahead. The food is disgusting beyond words and extremely monotonous, the difference between lunch and dinner menus negligible.

 

Imagine forever waking and seeing a row of four fellow-victims opposite. Often, everyone’s asleep, on their backs, mouths open, snoring more or less noisily. Knowing you present the same unedifying spectacle to them is not good for self-esteem. In the far corner was Carlos, a Chilean recovering from prostate surgery. His expression permanently startled, and fearful, Carlos barely inter-acted with anyone else, burying his nose in one Marguerite Yourcenaar novel after another. Next to him was Brian, who was in a terrible state, his skin wrinkled and fissured, like a diabetic denies insulin. Unable to speak, Brian could only communicate with grunts. Yet a sweetness always shone in his eyes. The moment I arrived, he gave me a thumbs-up; and that became the gesture with which we always communicated. Most heart-breaking was that Brian never had a visitor in the time I was there. I can’t imagine how he is going to cope once he’s released.

 

The other two beds opposite were occupied by people on shorter stays; a Kurdish man who drove Brian to distraction because of the huge and hugely noisy caravan of relatives who visited him, despite constant reminders from the nurses that only two people were allowed at a time; an immensely obese man who’d had his bowel removed some time ago but had been run into by a kid on a bicycle, causing the suturing to burst; an elderly Irish carpenter who spent his time rustling noisily in the many plastic bags he’s brought with him; another elderly man who joked that he knew his enema would only work once in the taxi he’d ordered to take him home. The single other bed on my side was occupied by John, the only one of us who appeared to be able to stomach the food, eating his way methodically through every menu, much to my involuntary disgust as the smells floated across.

 

Above all, in hospital one can barely string more than a few hours sleep together. The interruptions are constant and implacable. From 8 am, there’s a perpetual round of taking of patients’ blood pressure, of their temperature, of siphoning off their ‘bloods’ for testing, of administration of medicines, of doctor’s visits, of blood-thinning injections, of ‘meals,’ of bed-changing. I estimate fourteen to fifteen interruptions every day up to midnight. Then, if you have the ill-luck to be situated adjoining the nurses’ station, as I was, there’s constant noise throughout the night, chatting, laughter, the arrival and departure of patients, of trolleys, the call signals to nurses, the phones ringing. You get more and more exhausted every hour you spend inside.

 

Little wonder that by the sixth morning of my stay, the Monday I came home, I was at the end of my tether. I spent twenty minutes retching into one of the paper bowls provided for the purpose, watched indifferently by a nurse at the central station. Once she’d finally shuffled over to dispose of the thing, I forced myself out of bed, waddled down the far corridor, phoned my friend Gabi, the counselling psychologist and broke down completely, barely able to say a word through my sobs.

 

Yet her patient listening and encouragement proved the turning point. Somehow, the tears helped vent the psychological burden as surely as the final bout of vomiting had purged most of the remaining poisons raging inside my body. By the time my surgical team arrived, I felt calm again, reassuring them I was ready to be discharged. The only obstacle remaining was that, after a whole week, I still hadn’t ‘emptied my bowels.’ They didn’t like that, even though ‘timely discharges’ is identified all over the ward as that month’s ‘customer-service’ target. I was sent for an x-ray to make sure there hadn’t been a blockage. Perhaps it was the x-ray because, thank God, my body at last responded, just before lunch-time, even if only a few miserable sheep’s pellets. I was free to go. I couldn’t help my elation.

‘Tiggy,’ I grinned, ‘I’ve had a shit.’

The student nurse grinned back, completely unabashed by my language.

 

Looking back now, from a vantage point where I’m not taking any form of medication, I realise that the intense depression I felt during my last few days in hospital was largely a chemical reaction. I can scarcely believe what I had pumped into me: epidural, general anaesthetic, fentanyl (synthetic morphine), anti-vomit medicine, blood-thinning agents, eight paracetemol tablets daily, anti-constipation agents (Movicol laxative twice daily and senna pod tablets nightly). Yuk, Yuk, Yuk. The effects on the body are staggering. 62 years of regular peristalsis come to a complete halt as your bowel has simply ‘forgotten’ how to ‘open the bowels.’ The first time I got out of bed, it was as if I was having to learn to walk all  over again. My legs were so heavy I could hardly move them, my sense of balance so compromised that I had to cling to Anna for support.

 

But equally difficult were the psychological effects of the total loss of independence. I didn’t even have ownership of my most basic bodily functions. Being ‘encouraged’ on a regular basis to go and ‘open your bowels’ is hardly agreeable in any circumstances; but when you’re dragging your catheter along on a tripod for company to the airless, window-less latrines, where the smell of the chemicals being used to keep them clean makes you want to gag, it becomes near-impossible. The final humiliation was the enema I was given to try to jolt my bowels into action. Not so much the intrusion into a part of the body which no-one ever gets to see in normal circumstances, though that’s bad enough, but the nappy you have to wear afterwards, ‘just in case’ you don’t make it to the loo quickly enough. As the nurse taped that nappy on, I felt that one can’t fall any lower.

 

I guess what really surprises me, in retrospect, is how little the NHS seems attuned to the psychological consequences of an operation. Several mornings running I told my nurses I felt helplessly depressed and needed some help. They all seemed surprised, though they must come across this all the time, if my friends who’ve had operations are to be believed. One after another, they’ve been telling me of the abysses they, too, slipped into, sometimes for weeks after their ordeals. Yet there is absolutely no support when you get into this state.

 

Looking back now, four days after arriving home, I am now really beginning to put this ordeal behind me. I can even laugh at myself in the cartoons my dear friend Janice in New York has sent me.

The cartoons
The cartoons

 

Janice
Still waiting for those peonies, Janice! 🙂

 

 

I can rejoice being back with Anna, Maddy and my brother Ames, I’m eating well, I can take an occasional turn round the roof-deck, and am starting to contact friends again. I’m also fortified by the knowledge that in so much of classic literature, the protagonist has to go down into the underworld as part of the journey towards renewal and enlightenment. So even if I am gagging with relief to have managed to get out of my particular Hades, I’m not going to forget it in a hurry. It’s taught me valuable lessons which I’ll come back to in the final post of this part of the blog.

 

Apologies if this post has had a somewhat downbeat tone and the prose has been a bit turgid and stiff or more than usually formal. It’s been difficult looking back, but writing in this detail about hospital has really helped me put things in perspective. My old self is rapidly reforming. I’m regaining my robust sense of pleasure in life and thoroughly enjoying my beloved family. And I’m more determined than ever to beat this thing. I haven’t gone through Hades just to let this disease conquer me further down the line. Underpinning that determination is a further major, major development which I will share with you in the next post…

A brief update

Dear all,

a very brief interim catch-up post.

I am now getting towards the end of the second full day of being back at home and my morale is rapidly improving. It’s been greatly boosted by seeing darling Maddy again (Anna and I decided to spare her hospital visits) and by the arrival today of my brother Ames from California whom it is too lovely for words to see again. Physically, too, I am on the mend. I haven’t had any pain-killers since yesterday morning and – apart from coughing, sneezing and even laughing, which can produce exquisite pain in the abdomen area – am fairly comfortable. Today Ames and I completed a 250-300 yard walk outside the flat and I aim to try to increase this day by day.

However, I still feel frail – too frail to do a proper post today, as I’d hoped. I have all the notes etc but just haven’t been able to gear myself up to describe my hospital experience. I think the inhibition is more mental than bodily – I have to say that I’ve found the psychological consequences of the operation much more challenging than the physical side of things.

I hope to do this post tomorrow and it will be followed by what is planned to be the final post for the time being – for reasons explained in earlier posts. This final post will shed further light on my steadily improving morale, so please hang on for it.

Lots of love to you all and, once again, thank for the huge love, support and concern you’ve shown me. I feel incredibly humbled by, and grateful for, all you amazing people who surround me.

xx Bart

 

Back Home

Dear all

just a brief message to let you know that I’m back home. I was discharged yesterday afternoon but there was so much to do once back here that Anna didn’t have time to update.

I’m greatly improving, both morale-wise and physically, as a result of getting out of hospital, which I found a nightmare despite the caring staff etc. Once I feel sufficiently rested, I will do a post about it though it will probably only be of interest to fellow-sufferers who may have to go through the same process one day. It will certainly not be for the faint-hearted as I will be trying to describe and account for some of the worst feelings I’ve ever experienced in-between a few brighter spots.

Lots of love for now, Bart

Bart today

Bart continues to make great progress and today has been disconnected from the many support devices and pain relief that he has been hooked up to for much of this week. He is now able to walk around a bit. He is though feeling very low – the inevitable post-operation come down from an enormous cocktail of drugs, no doubt. And with much lower doses of pain killer he’s much more exposed to the pain now. He is also hating being on the (very noisy, busy) ward which, as many people have said, is actually a good sign. Bart should be home on Monday, where I hope he will finally be able to have some uninterrupted sleep. And no doubt he’ll be keen to have visitors soon.

Thanks again for all the very kind messages.

Anna