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Diagnosis and Prognosis

My very dear family and friends,

I write with melancholy news, I’m afraid. I think it best not to beat about the bush.

The tumour has spread into two lymph nodes and each lung. My surgeon, Mr Khoubehi, is proposing to operate to remove the kidney and lymph nodes with a provisional date of Tuesday 12 May, the soonest he can do it. Unfortunately, the lymph nodes will require open surgery – they can’t apparently be removed by key-hole. This will mean a much longer recovery time; an estimated five days in hospital, followed by between 6 and 10 weeks at home. Once that period is over, they will scan the lungs again. At that point, they will decide whether to proceed with ‘biotherapy,’ ie massive doses of female hormones. Or… On the plus side, while in the lungs, this remains kidney cancer and is, in theory, very slow growing (as well as resistant to chemo, so at least I’ll keep my golden-grey locks 🙂

Inevitably, I forced Mr Khoubehi to do the strategic prediction, which he was understandably reluctant to do, since every case is different and no-one can tell. He said that in his opinion, I could have as little as six months, or as much as six or seven years. I intend to be one of those people who defies all predictions and  who is around for much longer.

However, I will be living my life henceforth as if I only have six months – ie to the max for as long as I can. I had a lovely day with my friend Richard and then the most beautiful walk with Anna in Battersea Park (I’ll post some pix tomorrow) prior to going to C and W, and intend to have as many more such as possible. Every day after that is a bonus.

Please, all, please do not be downcast on my behalf. I have had a good and lucky life until now. No doubt I will in due course have huge anxieties and regrets concerning Anna and Maddy, but insofar as I can separate myself from them for the moment, please don’t lament for me. As we were leaving C and W, we saw a poor boy, probably about seven years old, obviously extremely ill, being wheeled in, white as a sheet and his head lolling helplessly. Compared with him, I’ve had all the luck in the world.

What I would love to do is to see as many of you as is possible over the next few months and enjoy some time (and laughs) together. It’s probably best to contact me by email for the moment, if you don’t mind. But I would love to see everyone in due course.

That’s all for now, folks. Please stay positive and strong for me.

Lots of love, Bart xx

Friday-Sunday, 17-19 April: Of catching up – at last!

So here we are, Monday morning, 20th April – my big day and big brother Ames’s birthday! Have a tub of ice-cream for me, mate, at 3.50, UK time, when I meet the multi-disciplinary team at C and W! I wrote the post yesterday but wanted to let it settle overnight before putting it up. I’ve just about caught up to the present, so the next post, to give you all a quick summary of the final diagnosis and prognosis, will either go up  this evening or tomorrow, depending on how I react to what I’m told. Since the ‘phoney war’ ended, I’ve been living in a weird temporality. Sometimes today has felt aeons away these last three days, at others that it’s been approaching with the velocity of an express train.

Friday morning brings me the first serious pain I’ve had since the kidney attack. It woke me a couple of times in the night, but when I get up the right testicle has resumed deep ache mode. If it’s referred pain, then it might be the kidney reacting to all the radio-active gunge from yesterday afternoon. If not, then what? I steel myself to do without any of the opiated pain-killers which have stayed in their packs all this time. If it’s still like this in half an hour, however…

It was the right decision. A bowl of muesli and a cup of builder’s tea later and the ache is receding. By the time I meet my mate Gideon for lunch at our local Whole Foods cafe, after three hours typing, I’m neither aching nor radioactive – though I do feel whacked.

Gideon was my Pilates teacher for many years and has played a prominent role in local environmental politics, spending a huge amount of time helping clean up the River Wandle (after which our borough is named), reintroducing trout into it (mostly immediately snaffled by the growing army of the hungry in London) and educating local school-children about the importance of caring for our rapidly-diminishing pool of natural resources. During a long and distinguished career as a Pilates teacher, Gideon has become increasingly interested in a holistic approach to health and stresses to me the importance of good diet and taking the right supplements to help my immune system in the weeks ahead. He gives me some uplifting stories of people who’ve battled back from apparently far worse scenarios to mine.

yoga125
Gideon practises in Battersea Park. Thames and Albert Bridge behind hin

This is my first introduction to so-called integrative approaches to cancer treatment. I have considerable sympathy for the approach, having long believed that mind, body, emotions (and, dare say the word, spirit!) are deeply inter-twined – one reason I’ve always taken lots of exercise. I’ve always eaten pretty well, too – a weakness for chocolate and ice-cream notwithstanding. It’s very rare that I eat anything fried or fatty and I haven’t bought red meat since 1980. Gideon suggests that I also think about a cancer-specific regime of recuperation through Pilates, mentioning a woman whom he helped a while back and who is another of the flourishing band of those who’ve battled back to health. It’s good to catch up. I’m particularly happy for Gideon that he’s recently met a new partner, an Australian woman called Charmaine, and the discernible uplift in his mood and bearing that this has wrought.

There’s a lot more of this over the next few days. Anna has a university friend called Sara who retrained later as a nutritionist. Moreover, she has had a long-term relationship with someone who’s suffered from bladder cancer. She sends a preliminary overview of the ‘integrative approach,’ stressing the importance of tailoring nutrition intake to the specific drugs which may be used in treatment, some to neutralise certain key nutrients – or worse. It’s a very useful email but we decide we won’t take it any further until after Monday, when we’ve got the diagnosis. I can’t help but recognise that Sara’s probably right that most cancer doctors and consultants know very little about nutrition beyond what common-sense dictates. Otherwise why would hospital food be so appalling?

I’ve been feeling more and more tired as the day’s worn on and hope it’s attributable to the effects of the Isotope. However, knowing that Anna is pretty tired, too, I’ve been out to get the ingredients for one of the dishes which Elena made last week-end, pasta in cheesy sauce, which Anna, Maddy and I all loved equally (the creaminess comes from the addition of Philadelphia to the usual cheddar and parmesan.) I’m looking forward to entertaining them at mine. Because I’ve been going so often to theirs, Maddy hasn’t stayed here since the before the kidney attack, more than two weeks ago. Consequently, Anna has had no night off either in all that time and I feel worried by how drawn she looks now.

The first part of the evening is pretty mortifying and bad for my morale. First, despite badgering me for weeks to get it, Maddy won’t watch The Lady and the Tramp. Someone has told her it’s scary. Even Anna’s reassuring presence beside her on the sofa won’t persuade her. I feel my spirits plummet as the over-familiar theme tune from Peppa Pig. Worse follows as she refuses point-blank to eat the new pasta dish which she ate in enthusiastic volumes at the Bennetts.’

‘But I want chicken dippers.’

I don’t have any in stock. Nothing will persuade her, neither good or bad cop routines. For the first time in a very long while I feel myself growing angry with her. I manage to keep a lid on it while Anna and I eat. She, at least is very appreciative. Only when Maddy’s told there’ll be no ice-cream unless she eats something, at last, does she relent. She has the Moore-Gilbert addiction to the stuff. We compromise sorrowfully on a thick slice of wholemeal toast and some grapes. But when I get the ice-cream out, worse follows.

‘It’s not mint chocolate chip,’ she rages, ‘I want mint chocolate.’

It’s what she usually has for a treat when she stays on Fridays. I try to explain that there wasn’t any when I went shopping in ASDA this afternoon. She won’t accept it, tears of disappointment boiling down her face. Even Anna’s patience is wearing thin. We’re both exhausted and this is the last thing we need.

‘OK Maddy, I’m going to throw the new vanilla in the bin,’ I shout at her.

Immediately, she concedes. She really hates it if I yell. She then proceeds very happily to tuck away a couple of scoops.

My nerves are fried. And Anna’s, too. We’re in bed barely half-an-hour after our three-year-old.

I wake up anxious about our Saturday jaunt to Sally’s. She’s invited us for lunch and to sit in the garden before she downloads a cache of convalescence music onto my Ipad. What if Maddy reacts to Sally’s food as she did mine? But my fears prove unfounded. After a good night’s sleep, she’s back on her usual gold-standard behaviour and even though she hasn’t seen our host since last year, well remembers the time she splashed in Sally’s kids’ pool, which is set up every summer for her army of great-nieces and nephews. Our host is a little discombobulated, having had the front of her car sheared off by a lorry a couple of hours earlier. Typically, she doesn’t make a fuss about what must have been a frightening experience, insisting she wasn’t going to postpone our visit for anything.

It’s so nice to sit outside for the first time this year in a garden, enjoying the sun and the abundance of spring colours which Sally has created. When I hear she has a student horticulturalist coming to help her out this afternoon, my ears prick up. My large roof terrace is in a pitiful state after winter, but I just don’t have the strength to shift tubs around and do the manual work that’s needed to get it all in order. However did I manage all those years until 2013 with that enormous garden in France, which I used to so love looking after, crazily abundant though it was? Suddenly I have the measure of my recent decline.

Maddy and Sally are mutually charmed. Maddy adores the wooden summer house at the end of the garden, especially the idea that adults aren’t allowed in. When she’s explored her fill, she makes friends again with Minnie Mouse, Sally’s black cat; and helps her water the garden, just about resisting her mischievous urge to turn the hose on us. In turn our host finds her funny, engaging and very well-behaved, especially when she tucks in without complaint to a baked potato and cheese, demolishing even the skin, before turning her attentions to a plate of strawberries and a mini-ice. Naughty-nice Maddy. I’ve never known her to have a tantrum when we’re out visiting.

In Sallys garden
In Sallys garden

While she does some colouring, I get more advice about ‘integrative’ approaches to cancer. Sally’s never suffered from it but has had several friends who have and has consequently built up some expertise in the same area that Sara specialises in. She suggests I shift my diet from an acid to an alkali one, which cancer apparently doesn’t like at all. Nothing fermented, so no more soya sauce, which I’m addicted to, no vinegars and a whole list besides, including a lot of dairy and wheat products. No more pasta in cheesy sauce! I already eat enough of the lentils, greens and nuts which are recommended but I decide I’ll try to substitute almond milk for cows,’ and get into more spelt and quinoa products – apparently highly alkali. Weirdly, lemons are alkali but not most other citrus fruit. Oh, and Vitamin D, which apparently too few people get enough of these days, because of all the health scares about being in the sun. She gives me a book, too, to remind me of what to eat and not. I feel a bit conflicted. But the turmeric tincture’s certainly worked and there doesn’t seem any harm in trying, depending on Monday’s diagnosis.

Anna and Maddy leave soon after lunch to go and meet Anna’s friend Catriona, back in Clapham Junction. Sally’s gardener turns up and once she’s set him to work, we retire inside to download onto the Ipad. It takes us quite a while, partly because I’ve lost all my Apple ids and have to start again from the beginning. Duh! Boy am I tech-hopeless. Still it’s well worth persisting. I leave at tea-time with her gardener’s details and many gigabytes of music of every imaginable kind. I’m looking forward to several weeks’ listening. Sally and I have similar tastes, so I’m sure I’ll enjoy her selections.

On the way home, the pubs outside West Brompton station are choked with football fans. Even though they’re Chelsea, mostly thick necks, beer-guts, shaved heads, tattoos, eyes slightly too close together, I can’t help feeling sorry for them – quite apart from their choice of team. They all seem to be red-faced from the sun, smoking vehemently and necking lakes of lager before their top of the table clash with Man U. I wish I could tell them about my tumour. But having had a few close shaves in the past with the most thuggish set of fans in English football (well, since the demise of Leeds United), I’m not going to risk annoying them. Something similar happened earlier in the week, when I was on my way to Anna’s. On a side-street, I passed four boys – none could have been older than ten, the youngest maybe six – all rolling cigarettes. My heart bled for them. Don’t they notice the army of the ill around us? Lately, I can’t keep help but notice the battalions of stoopers, shufflers, coughers, shakers, wheezers and stick-thin addicts on our pavements, not to mention the multiplying cohorts of the obese. Why should they? Before this malady befell me, I barely flicked them a glance, either. B’stard. The insouciance which health gives you.

Back home, I rest for awhile, watching my own team, Arsenal, take on Reading, well towards the bottom of league below us, in the FA Cup semi-final. I can’t bear it for long. I’ve been saying for years that our once-great manager, Arsène Wenger, should pack his bags and fou le camp. Here we go again. Instead of respecting the opposition, – it doesn’t need a genius to deduce they couldn’t be more motivated for this biggest day of their football lives – he’s sent out half the second team and included defenders who haven’t played first-team football for months. Worst of all, he’s playing Aaron Ramsey on the right, where he laboured so unproductively for most of last season. We just scrape through, but only after extra time, and only thanks to a howler by the tiring Reading goal-keeper. Belying their position nearly forty league places below us, Reading fought us to a stand-still and deserved to go through more than we did. Wenger seems incapable of learning any lessons. After we were recently dumped out of the Champions League by unfancied Monaco, their manager rightly accused Wenger of arrogance, of treating the game as it has been won even before kick-off. Quite right! Arsene out! Still, I’m not so interested either in my team or football as a whole, now it’s been perverted into a monstrous, moneyed spectacle manipulated by non-dom crooks and Gulf oil oligarchs. Standing watching Arsenal Reserves play Cardiff Reserves with 200 other saddos on a soaking Highbury evening in 1966 – that was real passion!

Fingers Furnell
Proper football! Highbury, c. 1966. ‘Fingers’ Furnell lives up to his name. No-one on the sardine-packed standing terraces behind had even heard of prawn sandwiches….

It’s a quiet evening at Anna’s, Maddy in a loving mood as she goes to bed. She’s starting to enjoy my new series of adventures involving Kaa, the snake from the Jungle Books who inadvertently falls asleep on a cargo boat in Mumbai and finds himself transported to New Orleans. Maddy particularly likes Kaa’s pronounced hisses, which I exaggerate even more to make her laugh, opportunistically making use of the inevitable ‘Mississipi.’ Anna and I again follow suit within less than an hour. At this rate Maddy will soon be putting us to bed. I don’t have a great night. No pain, but drenching night sweats again. I have to turn the duvet over each time I get back from the visits to the loo which my new-found determination to remain fully hydrated at all times have entailed.

It’s sobering to wake on the last full day of truce before tomorrow’s meeting. Besides, excited by her prospect of a day out with Rosa and her family, Maddy’s decided to wake up soon after six-fifteen, something she hasn’t done for a long time. Thank God we all got an early night. After a very slow breakfast, Anna takes our daughter round to Imogen’s. It’s a bitter morning, with a nasty east wind and we’ve all had to put head-gear on. Yesterday, Anna and I came to the decision that she should take advantage of Maddy’s absence to try to get back into her work. The new term starts tomorrow and with all the upheavals of the last few weeks, I sense she isn’t really prepared psychologically for the exam-term rush. Besides, perhaps a few hours of reflection on my own will do me good, steel me for tomorrow without the danger of bringing her down.

My plan was to swing by Battersea Park for an uplifting tour of its spring-time displays. All the cherries and May will be out, not to mention the blue-bells. But it’s so cold that I’m driven back towards mine. En route, I stop in at Il Molino, half-way between the two flats. There I bump into Johnny, an old mate from Pilates who lives round the corner from here. We catch up and he’s very supportive. ‘Community’ has become such a cant word, abused by politicians on the Right and Left seeking to ‘save’ public money by cutting back on essential services and dumping their hapless former beneficiaries onto ‘the community’ (i.e. charity.) Yet I feel grateful to have lived round here since 1980, acquiring in that time an ever-expanding acquaintanceship to supplement my friends.

A cheering email from Haim awaits me. A group of prominent diaspora Jewish and Israeli academics have teamed up to condemn the cancellation of the Southampton conference as a serious assault on free speech and inquiry. Perhaps, with a lot of effort and the cultivation of such allies, this terrible wrong can be righted. But our grievance is put into perspective by the news that 700 migrants have drowned on their crossing between Libya and Europe. It’s sickening. But what to do? Ten thousand migrants have reached southern Europe in the last week alone, so this year’s total is likely to way exceed the 170,000 who made it in 2014. How many have been lost at sea on top of this? 10,000 in the last year? An Italian government official describes the trafficking as ‘the new slave trade.’ I’m not sure the analogy’s at all appropriate, but perhaps ‘we’ have to mobilise on a similarly grand scale as the Abolitionists to address this problem?

I put up the last post and think about this one. As I’m doing so, I get an email from my brother Ames with a lovely picture of my mother in her pomp, in Africa, when he and I must have been about ten and eight respectively. I’ve never seen this one before and my heart melts as it rolls the years back. There she is, smiling, happy, youthful, the mother of four sons, yet slightly vulnerable and shy, with one of the pair of Congolese Grey family parrots she loved so much resting trustingly on her. She was heart-broken when one of them (I think Ruanda) escaped as it was being shipped back to England. Her buddy Urundi palpably suffered in the freezing cold, beneath the grey skies of England – as we all did. I was always thankful that Ruanda was spared his shivering and lonely fate and wished he’d managed to get away, too. Judging by Mum’s evidently recent hair-do, it must have been taken during some posting near Arusha or Dar-es-Salaam, probably the only two towns in colonial Tanganyika which could have supported such an establishment. She appears to look meaningfully at me, as if offering encouragement as I head down the path she’s travelled before me. It seems like such an encouraging omen to arrive just before the Big Day. It’s such a shame she didn’t live to see her new English grand-daughter.

Marise with Ruanda
My mother Marise with Ruanda, Tanganyika, early 1960s.

I read a bit of Sally’s book and head off to stock up on some of the basics she and it recommend. It’s an expensive business this. A brief visit to two different health shops and my wallet’s £100 lighter, just for some vitamin supplements, soya sauce substitute, non-wheat pasta, wheatgrass powder and a few bags of different nuts and seeds. Should I be going fully Organic, dragging Anna and Maddy behind me? On the one hand, it’ll cost a fortune. On the other, what’s the point of continuing to eat stuff covered with pesticides, especially when environmental pollution’s one of the factors most closely identified with kidney cancer. Well, let’s see what tomorrow brings before making any decisions on that score.

I’d aimed to spend part of today formulating questions for the surgeon tomorrow. But it zips by and I’ve been too absorbed in other things. I feel calm and steady. The questions can wait until tomorrow, when Anna and I can write them down over lunch, before taking that uplifting walk in Battersea Park, en route to C and W. The forecast is for sun all day. As I prepare to turn in, I flick over the front page of the Guardian. The news about the Mediterranean migrants gets worse and worse. But here’s another good omen for me, in a piece on Timothy Spall, my favourite British actor, whose wife Shane I taught at Goldsmiths in the early 1990s. To my surprise, I learn that in 1996, Spall was diagnosed with acute myeloid leukaemia, a variety of cancer which sounds much nastier than mine, when he was 39. 85% of diagnoses lead to death within three months and Spall was only given a few days. Yet here he is, nineteen years later, talking about the latest work on his prolific and distinguished c.v. Wonderful!

Wednesday-Thursday 15-16 April: Of fear, Freddie and ‘phoney wars.’

To my surprise and relief, I’ve almost caught up with myself! Here I am writing this ‘post’ on Friday the 17th. The mini-heat wave continues, the weathermen smugly boasting that it’s hotter in London than Athens and Rome as if this is further evidence of Britain’s moral superiority over the rest of Europe. I’ve had a number of positive responses to the blog and feel more confident as a result. Before I can get back to it, there’s correspondence (this is a 55-way debate with everyone on the mailing list I’m on, and there are many others) about what to do in the wake of the Southampton debacle. I urge we should appeal, carry on the fight.

However, a sobering email from Anna’s father, John, reminds us of the perils of continuing down this route. He reminds us of the denouement of a recent case in the Employment Tribunal brought by a Zionist academic against the university union UCU. The man alleged that UCU was guilty of ‘institutional anti-semitism’ by virtue of its deliberations over a boycott of Israeli universities (which never transpired), thereby infringing his rights as a British Jew under the Equality Act (yes, I know the ‘logic’ is difficult to follow.) Despite the advocacy of the highest-profile celebrity British Zionist lawyers, who were engaged on his behalf on a pro bono basis, the judge dismissed every one of the ten claims urged in the suit and reprimanded the claimant both for his “impermissible attempt to achieve a political end by litigious means” and for wasting vast amounts of public money in the form of the twenty-three day hearing his suit required (think what that could have been spent on!).

The suit was at times, quite literally laughable, as evidenced by the following passage from the Tribunal judgement:

The Claimant does much of his campaigning through the ‘Academic Friends of Israel’ (‘AFI’), an impressively-presented organisation with a PO Box address, a mission statement and a letterhead showing its patron as the Chief Rabbi and its advisory board as comprising a list of dignitaries including the President of the Board of Deputies of British Jews. Despite appearances, as the Claimant engagingly told us, AFI consists of him, his wife and a computer.[1]

Less amusingly for the claimant, however, he was then pursued for £580,000 costs by UCU, which had had to put up a legal team to match the exalted reputation of their opponents, whom in the event they soundly trounced. John fears similar consequences if conference supporters continue down the legal road and lose. We certainly don’t have the bottomless pockets of the Zionist lobbies and the Israeli government which co-ordinates their activities. Taking his point, I then urge that we host the conference elsewhere, this time inviting the Zionist lobbies to come up with their own representatives on a panel to argue the case that Israel’s behaviour has been historically, and indeed remains, in conformity with international law. Not only will they then not be able to object that the conference is ‘unbalanced’ (not that it ever was, pro-Zionists being present amongst the advertised cast list, as we’ve seen), but we can have a few more good laughs at the Embassy hacks that they will no doubt parade to try to make the case – if they can find the balls. And if they refuse the bait, recognising the own-goals they’ll almost certainly score, they can hardly send along protest groups to an event to which they’ve been warmly invited.

What’s all this got to do with kidney cancer? Probably not a lot, except that according to the Macmillan booklet I’ve been given, anger is a very common reaction to cancer diagnosis. If I’m going to be angry, much better to focus it on certain forms of Zionism than on anything, or anybody, else.

However, Thursday brings new and more unsettling emotions. Overnight I have mild pain in my kidney. It’s nothing serious but enough to keep me awake for a while, anxiously anticipating the possibility of a new attack and wondering if I should take one of the opiated pain-killers in anticipation. It dies away eventually, however, and I drop into uneasy sleep. When I wake, I have a cough and feel like I’m losing my voice. This has happened from time to time, at least since the middle of March when my friend Nick remarked on it when we visited him for a day out in Cambridge. I try to repress the thought that it’s a sign of tumour spread, that a chunk of the wretched thing has broken off, travelled through the renal vein and become lodged in my lungs. I’m also anxious about the news we’re expecting to get from Wandsworth late in the day, telling us which primary school Maddy’s been assigned to for September. Let it be Wix, I pray, please let it be Wix. It’s simply too exhausting to contemplate having to get a massive bureaucracy to change its mind if she hasn’t got either of our first two choices.

I’m off nervously early to C and W for the last and most ominous-sounding test of all, the bone-scan. I arrive early and have time to sip a latte. I feel increasingly at home in the hospital. Having always irrationally dreaded them in the past, I’m very lucky that this is the one closest to where we live. For all the sick people, there’s generally an uplifting atmosphere, even today when my mood’s fragile. It’s light and bright and clean – even the busy loos are kept acceptable. A few other things have made me warm to C and W. First of all, they currently have an exhibition of photos of Palestinian pottery, created through from a collaboration between a school in Gaza and the hospital’s own educational trust. The Gazan pupils scanned and sent their designs and the resulting pieces were made by kids over here. Then they have some marvellous works of British art. My favourite is an acrylic by the great, recently-deceased, Bert Irvin, a fellow-Battersea resident and, to my mind, one of the giants of contemporary British painting. It must be three metres long and another high, a fabulous wash of fluidly-applied colours, through the abstract energy of which one can glimpse something like the form of land- or urban-scape. Apparently Irvin laid the foundations for his technique way back in the 1940s when he did several tours of duty as a bomb-aimer in the RAF, lying flat on his stomach for long periods over landscapes turned into two dimensions by altitude.

irvin_3250514c
The amazing Bert Irvin…

Time for the bone-scan which I’ve been told will take 3-4 hours. I report to the CT suite again where, to my surprise, I’m told to follow the green ceiling lights to the ‘nuclear medicine facility.’ ‘Nuclear medicine?’ What the hell, why wasn’t I warned? But the receptionist’s smile disarms me. When I arrive there, I wait in a little area next to a door marked ‘Gamma Ray Suite.’ From inside come the incongruous sounds of Peppa Pig. Can’t get away from the annoying porker, even here. I guess some poor kid’s been given it to watch to distract her from her treatment. ‘Gamma Rays,’ what are they used for? I guess I’m lucky. Imagine if Maddy had to undergo such things.

Not where you want to be heading...
Not where you want to be heading…

Soon enough a technician appears and takes me into a room where I have to roll up my shirt-sleeve for yet another infusion. The waste bin unnerves me: ‘Hazard: Radioactive Material: Do Not Remove,’ it shouts.

‘I’m not a junkie,’ I reassure him lamely, as he tries to find space amongst all the pock-marks of previous syringes on my inner elbow. ‘What are you putting in this time?’

‘It’s an isotope with a half-life of six hours. You’ll have to wait a couple of hours or so for the stuff to pass through your body and settle in the bones. There it’ll give off the x-rays which make scanning the skeleton marrow possible.’

Why wasn’t I told? Perhaps people wouldn’t come if they thought they were going to end up glowing in the dark.

‘They only show up the inside of the bones,’ he pronounces, as if reading my thoughts. ‘But you must avoid pregnant women and small children for twenty-four hours.’

Why wasn’t I forewarned? There goes the evening I’d planned with Anna and Maddy to celebrate the end of the scans and – we’d hoped – good news from Wandsworth Council. What a total drag.

‘Make sure you drink lots of water.’

I have plenty of time to kill now. Anticipating a break sometime during the treatment, I’ve brought along a baguette. I sit for a while eating it in the central atrium before picking up my book. Such a pleasure to be reading a mid-twentieth century British novel again after so long. Especially as, to my shame, I’ve never read any Patrick Hamilton. He’s one of a number of mid-century British novelists, including Rex Warner, Stella Gibbons and Winifred Holtby, who’ve slipped into undeserved obscurity. I plucked Slaves of Solitude off Anna’s shelves last week and it’s been the perfect companion on my recent hospital visits Though sometimes represented as a somewhat depressing novel about the home front in the 1940s, I find it very funny, spliced with the kind of dark humour which I think exquisitely appropriate for the pettifoggingly selfish provincial people in the blacked-out Britain whom Hamilton anatomises. I think I’ve got problems? Hamilton ended up drinking three bottles of whisky a day!!

Unexpectedly, something very weird happens. I have to put his book down because my hands are shaking. With fear. It comes in a tsunami, carrying everything before it. I have to bow my head in case people around me notice. Just when I can feel a cry of terror rising in my throat, the wave washes back, sucking most of the fear away in its train. The remaining streams and rivulets I can deal with after a few deep breaths. What is going on? This is my first such episode, sudden as the testicle or kidney attack and, its own way, just as disconcerting. I need to rationalise it. I slowly come to the realisation. After this afternoon’s scan, the ‘phoney war’ is over. There’ll be a truce between Friday and Sunday, another limbo period, before the real hostilities commence on Monday afternoon. I’m afraid of the unknown. I can’t take the initiative. I’ll have to sit there and be told what’s up without any proper means to prepare. I remember the advice of Patrick, my oldest brother: ‘Hope for the best and prepare for the worst.’ Something like the Palestinian idea of ‘pessoptimism.’ In any case, like my Christian Arab friends in Jifna, I have to be sumud (steadfast) for Anna and Maddy. But my stomach falls when I remember I won’t be able to see them tonight.

There’s stirring around me. Two young women in what look like Thai silk dresses and with bells round their ankles are setting up an amplifier. They usher a couple of patients out of the space between the benches which soon fill up with curious onlookers. I turn to find a couple of small children clambering onto the seat behind me.

‘Hello, I’m Freddie,’ the older one grins. He’s Maddy’s size

‘Please move them away,’ I urge their startled mother, ‘I’m radioactive.’

She stares for a disbelieving moment before shooing her kids off. Next up’s a heavily pregnant Asian woman. I repeat my warning. Clearly not understanding English, she leans in towards me with a beaming smile as if about to ask if I can repeat. I jump to my feet and take up a place against the wall where no-one can approach from behind. Now she looks at me as if I might be a UKIP supporter.

I’m beginning to feel a bit of a leper by the time the performance begins. A banner unfurls, proclaiming that this is part of a series of Thursday lunch-time events which C and W puts on for all and sundry. However, I’m very quickly hypnotised by the beauty of the dancing. It’s north Indian and the music’s as soothing as I could wish. The women take turns at solos before performing a couple of duets. The woman in blue keeps smiling serenely at me, as if she knows what I’m going through and is dancing specially for me. I know I’m kidding myself but when the performance ends half-an-hour later, I’m ready for the final scan.

The Kathak twirlers
The Kathak twirlers

‘Bit of a cough you’ve got there,’ the new technician comments, not very reassuringly, when I report back to ‘Nuclear Medecine.’ ‘I’ll need you to keep completely still during the scan, so please try to control it.’

He asks me along series of questions to only one of which I answer in the affirmative. Yes. I do have one joint which I think is arthritic. Though perhaps it isn’t any more? I strip off everything with metal in it, double-check my pockets for loose change and lie down. This time there are no weird noises, just the sound of a classical station playing in the background as I’m fed into the tube. Once I’ve been done top-to-toe, I have further scans on my feet and arms. The technician shows me a scan. It’s beautiful, white patches of denser bones and the pale outline of others swimming in liquid darkness.

‘See there?’ the technician asks, pointing to a my forefinger. ‘It’s picked up the arthritis.’

So that’s it. No more tests. Perhaps these technicians will know all the answers I’m after before I get home. I leave C and W and walk into brilliant sunshine. I phone Anna and tell her that I can’t come over. She’s very disappointed, as am I. What to do now? I can’t think what to do, so I just hop on the 345 which takes me straight home. Once there, most of the afternoon still lies ahead. But I’m feeling very flat again. I try to take up the blog; but for the first time I feel tremendous resistance to it. What the hell am I doing this for anyway? Isn’t it just a vanity project, to keep me in people’s thoughts? I can’t be arsed.

A little while later Anna phones again to check in. I tell her about the wave of fear I experienced. She tells me that she, too, has suffered moments of deep anxiety, even panic, but hasn’t told me for fear of worrying me. Talking to her makes me feel much better. I’m in this with someone who loves me, whom I can rely on. When I eventually get back to the computer, I feel better still. There’s a message from Goldsmiths HR saying they’ll support me and be as flexible as they can as long as this lasts. They’re governed by the doctor’s notes I produce, of course, but within those constraints, they’re right on my side. It’s a huge relief, removing one of the nagging anxieties I’ve had for some time now. It looks as if I’ll be able to finish my Leverhulme, after all, once I’m mended. Another reason to fight.

Remotivated, I return to the blog and soon find the usual pleasure of writing washing over me. If I have to be on my own tonight, best make the most of it. There’s an even bigger boost to morale when Anna phones again later, her voice full of colours.

‘Guess what? Maddy’s got into Wix.’

I leave my desk to do a little jig.

[1] For more detail about this symptomatic case of Zionist ‘lawfare’ ( increasingly resorted to when straightforward intimidation or moral blackmail doesn’t work), see http://jfjfp.com/?p=41306

Monday-Tuesday, 13-14 April: Ben, Blogs and B’stards

Ok, that’s enough of the cod-Montaigne ‘post’ captions beginning ‘of,’ i.e. ‘about.’ Probably I should drop the date-lines, too, because it sometimes feels like I’ll never catch up to the present. And who’s interested yesterday’s news? Maybe after next Monday…   It occurs to me that Montaigne was in some ways the prototype blogger, albeit using quill and vellum and needing a far longer dissemination time than today. In his utterly wonderful Essays (which I strongly recommend as the perfect bed-time reading to anyone who doesn’t know them), he launches into quirky discussions of whatever interests him, heedless of whether he’s going off track from the topic apparently under discussion; and there’s a strongly engaging autobiographical streak which allows one to track the development of this amazing personality over several decades – and his increasing physical problems, about which he’s particularly frank.

I continue to feel a bit overwhelmed by the kindness of friends, even people I don’t know so well. One such is another Tim, a family friend of the Hartnells. At Caroline’s suggestion, he and his family came to stay at my old place in France for a week after his partner Sarah died. I was more than happy with the idea. Without Sarah, I doubt Maddy would be with us now. Despite the attention of endless doctors and mid-wives, no-one noticed that our little girl was upside down in Anna’s womb until after the nine-month term was complete (the other face of the NHS!!) I’d often thought it odd that the top of Anna’s bulge felt so hard but, of course, one tends to defer to the ‘experts,’ especially first time having a child. Once Maddy was a day or two late, however, an increasingly uncomfortable Anna phoned Sarah, who’d had a long career as a mid-wife. She suspected something was wrong and urged Anna to go straight to her G.P. surgery, where they at last diagnosed the problem. We were told to report at 7 the following morning to St Thomas’ Hospital, where an emergency Caesarian was performed. Not only was poor Maddy wrong way up, but the umbilical was wrapped round her neck. I still shudder to think how easily we might have lost our darling if it hadn’t been for Sarah, who herself finally succumbed to cancer the following year. I think it helped Tim and his family to have a break in the Pyrenees, where we did some amazing walks, had wonderful meals and lots of laughs. Although I haven’t seen him in a couple of years, now Tim’s sent a card expressing his condolences and wishing me all the best.

My near-neighbour Ben comes over to help with the blog. He’s another of the very interesting friends I’m blessed with. Although we overlapped as undergraduates at Durham, we didn’t meet until many years later. Ben first made a name for himself as a TV presenter and programme maker, then as the admired biographer of several unusual and interesting subjects, including John Dee, Nicholas Culpeper, and Ada Lovelace – Byron’s science-minded daughter (all three of which I can strongly recommend). But when the commercial bottom fell out of literary biography a few years back, Ben – partly at my suggestion – decided to do a creative writing PhD at Goldsmiths. He’s got his doctorate now and completed a novel but is still awaiting a break-through in this new career-path. Literary publishing is in such dire straits now that it’s a very tough environment, as I myself know (soft-hearted agents, where are you?) The closest we’ve come to any sort of collaboration was last summer, when he kindly agreed to take on the role of introducer / patsy interlocutor (I’d sent hime the questions I wanted asked) at the launch of my memoir at our local Waterstone’s.

As I suspected he would, Ben finds the errant photos very quickly. They’ve nestled away on my back-up hard drive, rather than on the computer. Duh! He teaches me how to upload and resize them on the blog-site and after three hours’ patient tutorials and practice on these and other matters, I think I’ve got the hang of it all. He’s also brought some delicious polenta and pistachio cakes from his local café. Buggar the tumour, I’m not going to miss out on this. Over an accompanying cuppa, we reflect on my condition before he’s off home, promising to return and help archive all my Goldsmiths emails before I leave – whenever that may be.

Ben: biographer, blog-meister, barista: is there no end to the mans talents?
Ben: biographer, blog-meister, barista: is there no end to the mans talents?

That evening, I add two more entries to the unillustrated trial one Anna and I published on the web-site without any  publicity three days ago. Not without some trepidation. What if nobody likes the blog, or finds it in poor taste to so publicly discuss such private things? Then I tell a couple of people how to find it. It’s been a very satisfying process, despite all the hard work, especially the feeling of fashioning something positive out of this wretched turn of events. I head over to Anna’s, where I find Maddy and her friend Rosa dressed in Princess costumes. To help out Rosa’s mum, who’s single, Anna has offered to look after her every Monday evening until Imogen gets back from work – another example of a kind-heartedness which I find almost perverse given how busy she already is. The girls are full of mischief when I arrive, making me act out various ludicrous roles, from being a chicken to a doughnut. So far, I don’t think Maddy has the slightest inkling that anything is up, even if I haven’t been doing anything with her on my own for ten days now, fearing another attack. Let’s keep it that way for as long as we can. What will she think if I have to lose all my hair? Maybe she’ll want to paint it like an Easter egg.

The following morning, I notice something rather odd. I have no more pain in the top joint of my left fore-finger. It’s still crooked, but despite the industrial quantities of typing I’ve been doing, I feel nothing at all – even when I bend it down hard. Can the turmeric possibly be doing the same to the tumour? Should I resign myself to taking wheat-grass regularly? Only if it’s disguised in a pint of juice which, of course, the tumour might love…

When I get home there are very encouraging responses to the blog from Sally and another friend, Richard Skinner. What a relief! I spend the morning preparing new posts, to check I’ve remembered everything Ben told me, before heading over to C and W for my MRI scan. This is the one to see if the tumour’s spread into the renal vein (and thence, presumably, potentially, to the rest of the body.) When I arrive for my blood test, however, I’m met with blank faces. They’ve received no documentation. A rather surly nurse tells me to go and fetch the forms. I bridle at his tone. ‘You go and get them,’ I retort irritably. ‘I’ve done exactly as I was told in this letter.’ I thrust it under his nose. ‘It says the paper-work will be ready. I’ve no idea where to go and search for it. You’ve cocked it up, so you sort it out.’ He’s abashed and sets off to do so. I feel a bit ashamed of myself.

But I get irritated again when another nurse comes down, a pretty young Chinese-looking woman, apologising for her oversight. She introduces herself as the Macmillan Cancer nurse I was assigned on April 02 – who hasn’t returned a single one of my emails or calls (she never answers the phone) since then. ‘Why am I having to wait so long to get the kidney out?’ I snap at her. I’ve been asking her in much more polite and roundabout ways for some time now. ‘We can talk about this somewhere else,’ she conciliates, while my blood is drawn for what seems like the nth time since this process began.   I’ve recovered my equilibrium by the time we sit down in a nearby room. In fact, I soon find myself liking her. She’s probably been well-trained to deal with the irrational anger of cancer patients but she certainly gives the impression she cares. She explains that I’m being fast-tracked through the system. Hard to believe, but no doubt she’s right. There’s just so much demand. She answers my questions about diet and exercise – advising no change in either respect. Can I really go swimming again? What if I have a seizure in the pool? We discuss the financial, psychological and physical aspects of what lies ahead. But she can’t be very specific about what the latter might involve until all the scans have been completed and processed. As she takes me up to the floor where I’m to have my MRI, we chat amiably about Singapore, where she’s from, and how it compares to London.

MRI is the weirdest experience I’ve had so far, quite unlike CT or Ultrasound. I’m relieved to learn that no X-rays are involved. Another injection of gunge to highlight the soft tissue. This one is quite painful but the nurse rebuffs my protesting grimace as if I’m making a silly fuss. I strip, put on a gown, lie down and have headphones placed on my ears (as protection against the noise, I’m told). When I’m fed inside the MRI tunnel, bedlam breaks out. It sounds like I’ve been launched into some mad X-box games gallery. Ratta-tatta-tatta-tat comes the machine-gun fire; dudd-dudd-dudd, the answering artillery. Every so often there are the kapows you get with bulls-eye hits on your on-screen enemy and the eery wail of cop car sirens. Jacka-jacka-jacka, the machine judders from time to time, as if I’m being moved backwards and forwards. What on earth is it all for? I close my eyes, thankful for the head-phones, through which a woman’ voice from the next room instructs me to ‘breathe in…hold your breath…now breathe out and relax.’ Once, when she forgets to tell me to breathe out, I almost gag. O for the reliability of the CT machine’s HAL-like voice.

Afterwards, I head for the nursery playground near Blundells, where I meet up with Anna, Maddy, Rosa and her grand-dad, who helps Imogen out on other evenings of the working week. Maddy tries her best to keep up with Rosa and Gian-Luca, another nursery friend who’s a year younger. But she can’t manage it. I sometimes wonder if her hips got damaged during pregnancy. She was checked at birth and nothing was reported to worry about. So why can’t she seem to manage more than a speedy waddle? However, she climbs higher on the frames than I’ve seen her do before and she’s thoroughly enjoying herself, which is the main thing.   I’m in a bit of a dilemma as time moves on. There’s a hustings this evening for the forthcoming General Election candidates for Battersea.

Observing the Question Time format, I’ve already sent my questions in. But I’m feeling very tired. However, if I’m called up at the meeting and not there, they’ll doubtless be passed over. I submitted what I hope are a couple of killers for our sitting Tory MP, Jane Ellison, whom I’ve met a couple of times. She struck me as far too nice and sensible to be a Tory. She’s sympathetic to the Palestinian cause and against TTIP. But this is no time for sentiment. In a swing seat like Battersea, it’s just possible I can inflict some useful damage, especially as the hustings are being broadcast on local radio.   Duty prevails and I bid the girls farewell. I stroll west along Battersea Park Road which is snarled up with rush-hour traffic, wondering how much this sort of pollution is contributing to the epidemic of cancer and other ailments of modern life. Perhaps I should be voting Green. I stop at a Brazilian rotisserie en route for a snack and listen to some young black hipsters discussing how they can emulate the success of So Solid Crew, Battersea’s best-known contribution to the genre of garage. I eat my chicken and rice and head for the community centre on the fringes of the Winstanley, a gigantic and troubled public housing estate built to replace some of Battersea’s then-notorious slums and bomb-damaged housing after World War 2.

I arrive just before the event begins and to my surprise the place is packed. I manage to squeeze into one of the few remaining seats and my anticipation gathers as the candidates introduce themselves and set out their 3-minute manifestos. The first are predictable enough – about housing, the state of the NHS, the economy – but they’re interesting for being asked and answered with specific reference to Battersea. I keep rehearsing the one question I’ll no doubt be allowed to ask from those I’ve sent in:

‘Question for Jane Ellison. As an MP, you earn more than £67k, which will rise to £74k later this year if you’re re-elected. [Other public sector workers, such as myself, have been restricted to a one% rise] Your parliamentary register of interests records that you own two properties, once of which you rent out. So together with expenses, you’re trousering something approaching £100k a year. Yet you voted against raising the minimum wage to £8 an hour, despite London being one of the most expensive cities in the world to live in and despite the proliferation of zero-hours contracts, which the government you serve in [she’s a junior Minister in the Department of Health] has done so much to promote. Given all this, how can you, and the Tories, possibly pretend to be interested in the predicament of ordinary working people, whether in Battersea or the country as a whole? Doesn’t this prove you’re only interested in yourselves and your rich friends?’

But the chance to ask it doesn’t come. Perhaps because there’s already been one on the economy, which has taken up a lot of time? Or because mine has been deemed too specifically directed? Even when debate’s thrown open after the candidates have given their answers, I can’t seem to catch the moderator’s eye, however hard I wave my arm. He only seems to be interested in the genteel people in the first few rows. I manage to get in a few heckles, which draw disapproving glances from my neighbours. This is clearly not behaviour that the Battersea Society, which has organised the event, expects. When the Lib Dem candidate boasts that his party will put an extra £8 billion into the NHS, ‘and that’s a promise,’ I retort, ‘yes, like your one on tuition fees.’ When the UKIP fellow bangs on about how migrants are putting increasing pressure on the NHS, I remind him that one in four NHS doctors and 40% of its nurses come from overseas.

I find the occasion increasingly dispiriting. It’s not just because I’m being ignored, or am fading fast, but because the event seems to symbolise everything that’s wrong with British politics. We’re on the Winstanley Estate, certainly one of the most ethnically diverse areas in Battersea, in turn one of the most diverse areas of one of the most diverse cities in the world. Yet all nine people at the ‘top table’ where the candidates sit are white. When I look around the audience, it’s the same story. Amongst probably two hundred people, a couple of ‘Asian’ faces, a single black one – and he’s technician working with the radio crew. Even more striking is the age demographic. A clear majority are pensioners, with no more than a sprinkling of under-40s. It’s quite shocking to see who conventional politics does and doesn’t engage these days. But it’s little wonder that so many people are turned off and turning away. The whole system is rotten from top to bottom (here I’ll let you into a dirty little secret. In the last two elections I naively voted Lib Dem, because of their commitment to changing from ‘first past the post’ to Proportional Representation. Once in coalition with the Tories, they made such a hash of it, that the possibility of a fairer system has vanished for at least another generation). Entirely understandable that the young, gifted, and black prefer to spend their evening in a Brazilian rotisserie discussing So Solid Crew. I bet even the radio technician wishes he was there.

British Politics 2015-style:  Facing the top table. Ive found a couple of under-40s! But spot the missing demographic... sorry the qualitys not great
British Politics 2015-style: you need to be old, white and bourgeois to feel you have a stake

My mood’s not improved when I get home to find a despairing email from Haim. The organisers of the Southampton Conference have lost in their High Court appeal. I read the judge’s determination with astonishment. This means that in principle any group can now prevent any event on campus they don’t like. Merely by threatening trouble, they will licence cowardly university authorities to cite this legal precedent in order to refuse or cancel all manner of discussion, on ‘health and safety’ grounds. ‘Women’s Reproductive Rights?’ ‘So sorry, we’ve had calls from a pro-Life group.’ ‘Geology and History?’ ‘The problem is, you see, a Creationist organisation has been making representations.’ ‘The Rise of Neo-Fascism in Europe?’ ‘Thing is, the EDL might not be happy.’ Where will it end?

Saturday-Sunday 11-12 April: Of boredom, banality and boosts to morale.

Saturday-Sunday 11-12 April: Of boredom, banality and boosts.

 

I wake up feeling suddenly bored with my whole predicament. After ten days, the novelty and drama has begun to wear off. Besides, the good weather has broken up and, as Maddy would say, it’s a typically ‘soggy’ April day, dark grey sky, driving rain and a strong wind. After a lovely lie-in and lazy breakfast together, Anna heads back to hers to do some chores before making for Balham to lunch with Kate, Tara, Maddy and her father, John, also an academic and also very interested in Palestine / Israel. While we have rather different perspectives on the issues involved, I respect his views; he, too, is outraged at being denied the chance to give his paper at Southampton. However, I decide not to go. I feel a bit tired despite my good night’s sleep and feel I’ve got to get on with the blog if I’m ever going to catch up with myself by Monday the 20th when, it seems, I’ll have all the medical news I (don’t) want to hear. Can’t be conveying the crucial news several days after I get it!

 

The day passes agreeably, despite the apparent loss of a cache of photos I’ll need to illustrate this blog from my camera while I was trying to download them. I spend ages looking for them, to no avail. Thank God Ben’s agreed to come round tomorrow. If anyone can trace their whereabouts, he’s the man. When I go to one of my local cafes for a break, Sylvia, the nice Portuguese woman who makes the coffees, asks me if I’m alright. I nod wanly. She presses me until I tell her truth. But she’s misunderstood. She tells me her father had kidney stones and they’re easy to treat. When I explain, she bursts into tears.

‘Wheat grass,’ she eventually leans forward and whispers, pointing at the bank of sprouting trays behind her, while various other customers scowl at me as I’ve been rude to her, ‘it’s very good against cancer.’

Later, while I’m sipping my latte, she brings me over a free shot. Christ, I think, appalled by its hideous bitterness, this is going to kill me, let alone the kidney tumour. Little wonder that when I’m leaving, she recommends mixing it in some strong juice.

‘I was going to bring you some, but you just swallowed it in one go,’ she smiles.

 

We all regroup at Anna’s and have a nice evening. Maddy has brought back serious booty from Balham, some of Tara’s old soft toys. They include a giant Piglet, a unicorn and a kitten, all the worse for wear but clearly much-loved in their time. At bed-time, I’m astonished that Maddy has chucked out all her Frozen ‘people’ to make room for the newcomers. A bit fickle, I’m thinking, but in fact she’s made a sensible choice. Piglet alone takes up half the width of her bed. So glad Tara didn’t have Eeyore, Tigger or Winnie the Pooh, or she’d be demanding a double bed.

 

During bed-time, my mobile goes. It’s Haim, my ex-Israeli friend and great comrade from the days I brought a Freedom of Information action against Michael Gove, then Secretary of State for Education, to find out why he’d banned Haringey and Islington school-children from attending creative writing work-shops offered as part of the 2011 Palestine Literature Festival (see footnote 2 to the blog for April 02.) Haim was  my chief witness during the three-day hearing; he’d spoken at the Festival but I hadn’t yet met him then. I got in touch after one of the headmasters affected leaked a letter from the Board of Deputies of British Jews containing serious calumnies against him which I wondered if he knew about. Together with my other witness, we demolished the Education Department’s seven-man legal team’s utterly ludicrous attempt to portray us as a trio of anti-Semitic extremists. It was my introduction to the nefarious influence of Zionist lobbies at the very highest levels of government. However, because the story’s too long and interesting, I’ll reserve it for another blog when I have less to write about. Remembering how we met makes me realise, however, that I’ve already done some practical activism of the kind I mentioned earlier. The FOI action took over a large part of my life for nearly two years, ending only in late 2013. For the denouement, you’ll have to hold your breath – it’s genuinely funny in a sick sort of way…

 

What follows gives me a tremendous boost. Haim has read the opening chapter of my book on Palestine / Israel and is tremendously enthusiastic, insisting that it’s going to shake up the field. I know that as a good friend, he’s responded to my injunction to make no allowances for my illness. Having fought in Israel’s wars before seeing the light, I have always regarded him and his elegant wife Yosefa (who also did time in Israeli military intelligence, working for a while alongside David Grossman, about whom she’s pretty scathing) as examples of extraordinary integrity. They’ve suffered all manner of persecutions, including violence from Zionist extremists, for their principled opposition to Israel’s colonial policies. I’ve always been anxious that my research project has been trespassing into domains I’m simply not properly equipped to deal with. Now I feel vindicated. All the hard work over the first year and half of the fellowship seems to be paying off. I can’t express how much his call boosts my morale. So sod off, tumour, I mutter to myself as I hit the hay. Finishing the book is another very strong motive to keep going and see my most immediate enemy off.

 

We spend much of Sunday at the Bennetts, who’ve kindly agreed to be our witnesses at the low-key marriage ceremony we plan. Elena, highly accomplished in everything she turns her hand to, has already spent hours making some Ottolenghi vegetarian recipes (Anna’s veggie and I’ve pretty much followed suit in recent years) by the time we arrive. She has a beautiful open-plan kitchen in a beautiful house ‘betwixt the commons,’ as their area is known in local estate-agent parlance. They’ve recently moved there because of schools and the need for greater space, now their second daughter Lucia has arrived. It looks onto what I think is their master-piece. They’ve replaced the entire smallish and no doubt inevitably unsatisfactory patch of back-garden characteristic of the road with a Spanish-style patio (Elena’s parents are Spanish). It wouldn’t be out of place in a sultry corner of Seville. It even has dwarf citrus shrubs growing in tubs on the elegant tearracotta flooring, emerald splashes against the white-washed walls. As Tim points out, over one of his lattes, which rival anything I’ve ever tasted, even in an independent coffee-shop, such a space has many advantages over a lawn and borders: low-maintenance, quick-drying and it captures the spring sunshine where a conventional back-garden often seems to dissipate it in general sogginess.

 

The Bennetts, Elena, Isi, Lucia and Tim. Three more daughters needed to match 'Pride and Prejudice.'
The Bennetts, Elena, Isi, Lucia and Tim. Just three more daughters needed to match their name-sakes in ‘Pride and Prejudice’ 🙂

Between attending to her Ottolenghi dishes, Elena manages to find time to cook a creamy pasta dish made with Philadelphia and other cheeses for Maddy and their daughter Isi. It’s so delicious that I have to ask for the recipe. Forget kids, it would be a feast for Anna and me. It’s a delight to see how well Isi and Maddy get along. Born a week after ours, Isi attended the same day-nursery until Anna sensed Maddy wasn’t that happy there. We found a much better (and cheaper) place, though that meant that the kids went their separate ways. Nonetheless, they’ve remained excellent friends and we make a point of getting them together regularly in the hope that this first friendship will endure as their longest. Now they’re absorbed in games involving Isi’s Frozen figures, sprawling on the patio to push them around.

 

The food is quite spectacular. Elena’s rendition of Ottolenghi’s spices (she buys them in Tooting and grinds them herself) is spot-on from what I remember of my single visit to Nopi, his place near Piccadilly. I haven’t had food so good, as well as clean- and healthy-tasting, for a very long time. This is something else to do over the next few weeks or months – expand my honest but limited range of cooking. I’ve found it hard to come up with more than simple vegetarian dishes since meeting Anna. Perhaps buying Ottolenghi’s new book will help me spread my wings.

 

After lunch, Elena retreats for twenty minutes to the patio, to catch her breath and absorb some Vitamin D (her bones have been suffering as a consequence of the birth of Lucia). I join her, while Anna and Tim look after the three girls.To my surprise, Elena tells me that she’s suffered in the past from malignant melanoma and undergone chemo.

‘What you have to remember, Bart, is that one in two of us, or just a little less, has to go through cancer.’

I nod, a little ashamed by my self-absorption over the last ten days. Despite myself, I force myself to listen as she takes me through what chemo involves. She makes it sound much less bad than I’d imagined. She had a weekly hit, which involved feeling chronically tired and weak for a couple of days, followed by a rapid return to normality for the next five. Being constitutionally vain, I ask about hair loss.

‘It happens,’ she comments, ruffling her thick mane with one hand, ‘but it soon grows back.’

Perhaps I’ll be proactive if it comes to that. Get my head shaved in a barber’s first, and choose some slick head-gear. A bowler hat like the one Maddy wore in the Transport museum, perhaps.

 

We leave at tea-time, eager to give them a little Sunday time to themselves after looking after us with such concern and attention. Anna and Maddy head off to Northcote Road to buy some summer shoes for our little one. Winter is definitely over, even if this strong sunshine probably won’t last. Later, I get a text from Yosefa, endorsing Haim’s judgement. I’m thrilled again, though the acid test will be the responses from those kind readers who don’t yet know I’m ill. But at least I’m getting over my persistent fear hitherto of being dismissed as a second-rate chancer. We all team up again at Anna’s where Maddy proudly shows off her new pink shoes. We have the remains of last night’s Lebanese take-away. Too kindly, Anna’s insisted that I keep the extra portions of the Ottolenghi meal which Elena pressed on us before we left, for my lunch tomorrow.

 

Thursday- Friday, 09-10 April: Of Downs and Ups

The following morning, I head home early. Having selected from memory some of the most inappropriate music we could think of for a wedding, we searched the internet for further contenders. While we were doing so, I suddenly half-remembered a piece of music played at the funeral of my dear friend Alan, who died many years ago from cancer. For years I’d meant to chase up and identify it. I’d never heard it before Alan’s farewell and it had a tremendous impact on me. I was so stupified by emotion and the sudden overwhelming sense of Alan’s presence it wrought that I just listened in a trance to everyone else sing the unfamiliar words on the song-sheet provided for all his heathen friends.

 

Alan MacLachlan, 2003. In death, still larger than life.
Alan MacLachlan, 2003. In death, still larger than life.

After much head-scratching and googling, I recalled someone telling me after the service that Johnny Cash had done a version. Suddenly it was easy to hunt down, via his discography. ‘How Great Thou Art!’[1] When I get settled at the computer now, I want to hear it again. First up, however, is a Youtube version performed on ‘Songs of Praise.’ As soon as it begins, I burst into tears. They stream down my face for several minutes until the piece ends. What’s going on? Is it remembering Alan – or my wonderful Irish friend Larry from St Girons who went the same way last year? He’s been on my mind, too, since I got my diagnosis. Or am I weeping for myself, unspoken fears welling up from the depths? Or is it the unexpected encounter with the Sublime, as manifested in the hymn? A delayed response to yesterday’s non-news? Or the accumulated emotions of the last week? Whatever, I haven’t cried like that since receiving the news in 2010 of the death of Kimwaga, my beloved childhood minder in Tanganyika.

Kimwaga and I in Tanganyika, around 1957. He's warily holding a hyena cub, which may have become one of our menagerie of temporary pets.
Kimwaga and I in Tanganyika, around 1957. He’s warily holding a hyena cub, which may have become one of our menagerie of temporary pets.

 

Anna phones soon after to check how I am and we talk it through. I soon feel better and can get on with the day. Not so Anna. Alarmed by my fit, she determines to hassle Chelsea and Westminster to make sure I get the new scans done later today or tomorrow. Several hours later, she reports back. It’s taken this long to get through. As part of the Tory deregulation of the NHS, a single, under-staffed switch-board now serves seven hospitals, including C and W. The operator didn’t know who to try, especially as we only know the forename of the surgeon who called yesterday, Pippa. Eventually, Anna managed to contact Urology in C and W. There was just a voicemail and she left her details. Eventually, an administrator rang back, assuring her I’d be contacted as soon as the appointments were made. More frustration. I feel it as strongly on Anna’s behalf as my own. I wish she’d not wasted so much of her time. I so want her get back to the last chapter of her book and knock the thing on the head. Doing so would give her the kind of focus and distraction I’m getting from this blog. But she’s less cold-blooded than I am. So far I’ve little but good to say of the NHS. Apart from the time lost because of Easter, I’ve had an excellent experience. But suddenly I have a stab of real anxiety, not just about the latest delay, but about how easy it would be to get lost in the constantly ‘reformed’  bureaucracy of the NHS, as many have before me.

 

In the early evening, I have an appointment with my local G.P. He’s an amiable locum, from Rumania, replacing my normal doctor while she’s been on maternity leave. We go over the blood tests I had last summer and he reiterates that everything was normal, including renal function. Had the tumour been present then, he assures me, something would have shown. Apparently this wretched thing must have implanted itself since August. But I have doubts still. Following one of my blood tests at C and W, Doctor Dave told me that I had good renal function. The tumour doesn’t seem to have interfered with that. I guess that G.P.s can’t be expected to have the knowledge of specialists, so I decide to leave it until I’ve had my surgeons’ meeting. Dr. Ruhiga is genuinely sympathetic and expresses his condolences as he writes me a sick note for work and one for the insurance companies from which I’ll have to claim for my cancelled trips to Palestine / Israel and Denmark. He assures me that if I have any immediate problems, I’m simply to call him at the surgery, not feel obliged to come in.

Multumesc!’ I thank him as I leave. My one word of Rumanian always makes him smile.

 

The following day, I try to focus on the blog, thinking about ways to write more efficiently and effectively and looking at various web-sites to find a template I like. I also realise that I need to find out much more about kidney cancer if I’m to put myself in the best position to fight it. I read some of the booklet which C and W gave me but there’s so much information and so many varieties of the disease (I don’t even know which category mine falls into) that I find it hard to take it all in. Then – against my better judgement – I do some quick searches on the internet, trying to stick to what look like reputable sites. A couple of things unnerve me. First of all, kidney cancer appears to be one of the most obdurate varieties. Apparently, it doesn’t respond to any great degree to chemo, which is one reason they generally remove the infected organ unless they can be sure of excising it fully from the kidney (ie it hasn’t grown as large as mine.) Secondly, to my surprise and alarm, I learn that if it spreads, it remains ‘kidney cancer’ whatever other organs it implants itself in. So it doesn’t become lung cancer as such if it lodges in the lungs. That sounds ominous if it’s so resistant to chemo. The alternatives include radiotherapy, which carries a risk of promoting a new cancer in its own right. And ‘biotherapy.’ This involves pumping female hormones at a high volumes into the body. This is what my friend Larry in St Girons had to have. I remember him complaining bitterly about ‘growing bristols.’ Which is exactly what he did, poor fellow, concealing then under increasingly loose and capacious shirts. ‘Fecking tits getting in the way,’ he’d sometimes expostulate as he stooped over his plate when we met for lunch  at Gilles Simonet’s patisserie / restaurant in Place Jean Jaurès. Now I understand much better the humiliation he must have felt, despite my reassurances and his witty references to Tiresias. If I have to go down that path, I think I’ll to have to hide away at home…

 

Nonetheless, once I’ve put aside my brief researches, I soon feel calmer. Where does my seeming equanimity, at least on my own behalf, come from? To begin with, I decide, it’s largely because I’m 62. Perhaps if I was twenty, or even ten, years younger (as poor Stu was), I’d see things very differently. But apart from the teenage years following my father’s unexpected death, I’ve largely lived the life I wanted to. I had a fantasy childhood growing up in the great game reserves of Tanganyika / Tanzania, where my father worked as a conservationist. I’ve had incredible friends and some wonderful relationships (none more so than with Anna and Maddy). I’ve travelled all over the world, both for my job and for pleasure. And I’ve had a genuine vocation, which has just about sustained me through the often extremely annoying, narrowly ideological and quite unnecessary ‘reforms’ to higher education over the last few decades. More recently, this vocation has reinvented itself as a passion for non-academic writing. I’ve published a memoir and completed a novel (if any agents are reading this…) The desire to continue down this track is one reason why retirement doesn’t fill me with the dread it seems to inspire in so many people. Quite the opposite. My book on Palestine / Israel will be my last, and I hope best, academic work, after which it’s back to literary non-fiction and fiction. Who knows, perhaps one day this blog will provide the raw materials for something interesting. But let me not get ahead of myself…

 

And then, long after I’d thought it was way too late, I’ve been blessed with a family, something else to occupy me and help me grow, even in retirement. It’s difficult to express what having a little girl means to me. Everyone who has (had) one will know what I’m talking about. In my case, there’s added relish because Maddy arrived so belatedly and unexpectedly in my life. I know what it’s like to lose a father while still a child. It’s certainly one of the reasons I never had any of my own all these decades. I was just too afraid that they might have to experience the utter desolation I went through for several years (no such thing as counselling in the macho 1960s.) Now I realise all the more forcefully that I have to conquer this malady for her sake – as well as for Anna’s. Besides, I am NOT going to be cheated of seeing Maddy grow up into the beautiful woman she will undoubtedly become.

 

Anna’s sister Kate is going to take Maddy for a sleepover with her beloved cousin Tara in Balham, so we’re able to enjoy another evening alone, just the two of us. I’m beginning to see the upside of this illness! I make spelt pasta with vegetables and halloumi cheese and after dinner, we set to work on the blog. With her experience of writing one, we make good progress, though there are lots of things that we can’t work out (hers is hosted by her college.) I’m going to have to contact my friend Ben, who lives up the road. Even more than Sally, he’s the master of all things techie and I’m sure he’ll be able to tie up the remaining loose ends.

 

Before we go to bed at mine, I take a glass of water with some tincture of turmeric. My Brazilian friend Deni recommended it for the arthritis in my left forefinger (no doubt from too much time at the key-board.) It’s been sitting in the cupboard ever since I bought it, rational scepticism overcoming my temporary interest in ‘alternative’ remedies. It’s one of the basics of ayurvedic medicine, I remind myself. If it works on arthritis, perhaps the tumour won’t like it either or will at least stop demanding sugar. Let’s see what happens to my finger first over the next few days….

[1] https://www.youtube.com/watch?v=4arrdrAjxtg (skip the annoyingly long and shmaltsy prelude); check out also this little boy’s version http://www.godvine.com/A-Little-Boy-s-Performance-of-How-Great-Thou-Art-Will-Leave-You-in-AWE-He-is-Amazing–3858.html

Wednesday 08 April: Of being In Limbo.

It’s another glorious spring day as Anna swings by mine after dropping Maddy off at nursery. As anticipated, she went in with enthusiasm. We catch a bus to Wandsworth, where there isn’t much of a queue at the Registrar’s. The suite is surprisingly swish and slick and, like the sponsored gardens outside, has ‘privatised’ written all over it. Our registrar’s a sympathetic and engaging lady and is interested in both our lives, particularly the fact that I was brought up in Tanganyika. That must be the nice part of her job, chatting to her ‘clients.’ Everything’s in order and she takes us through the various venues and services on offer. I explain we can’t set a date yet, because of the operation and she’s very reassuring. She’s sure we’ll be able to find a slot quickly as soon as we know more, so long as we’re prepared to be flexible. As she talks, over her shoulder I observe the most popular birth names in Wandsworth for 2014. Number 1 is Muhammad and seventh is Syed.

 

There’s still too much time before the phone call so we get of the bus on the way home and go to a café. It feels romantic to be bunking off like this on a fine spring morning, holding hands and sniggling. Once installed, we discuss what sort of wedding we’ll go for. I’m all for something spare, efficient and low-key, in order to maximise our chances of getting it through quickly. We can plan our caravan for a 100 wedding guests in Morocco at a later date. Given the circumstances, Anna’s in agreement. The choice of music on offer is a little too sparse for our taste, however. And none of it seems very appropriate. Wandsworth Town Hall feels too secular for church, or even classical, music. On the other hand, pop and film score music will make it all feel a bit silly. Perhaps do without? What about photographs? And where will we take Tim and Elena for a nice lunch afterwards, to thank them for agreeing to be our witnesses, something which will inconvenience Tim, who’ll have to take time off work to do it.

 

Perhaps because we’re both a little nervous, we’ve had too much sugar – lemon polenta cake, an almond croissant and a something approaching a pint of freshly-squeezed orange juice. Is my tumour jumping for joy? Anna certainly isn’t and when we get back to mine, she has to lie down on the sofa to let the unwelcome rush subside. At mid-day, just as we’re thinking about what to do for lunch, my mobile goes. It’s Pippa, one of the Urology surgeons I met when I was first diagnosed. I try to keep collected as she tells me the news.

‘We have to do some more tests, I’m afraid. On a vein near the kidney. It’ll need an MRI scan. And we want to do a blood-test and a bone-scan. Will you be able to come in later this week or early next?’

‘Ok.’

‘It means your meeting with the surgeon next Monday the 13th is postponed for a week.’

I relay the news to Anna. ‘Well at least they haven’t found anything definite on the scans they’ve already taken,’ she responds reassuringly.

I nod. But we didn’t get the news we’d been hoping for, that the kidney could just be whipped out and be done with. I find the idea of bone-scans somewhat ominous. My mother died of bone cancer. Why would they be looking if they weren’t worried about something?

‘It’s probably just a precaution,’ Anna says.

I smile. I remember the pact we’ve made and the fact that it’s all out of my hands, just as it was before. It’s the further delay that’s annoying. If it wasn’t for Easter, we’d have had this news last Friday and I’d probably have done the new tests they want tests by now. If this tumour is growing at the rate it apparently is, then the sooner the kidney’s out the better. Can’t everything else they might find wait? Furthermore, the wedding’s almost certainly going to have to be put back – but until when?

 

We head back to Anna’s, thankful for the banal distraction of an appointment with Thames Water to ascertain why her cold water’s gone off in the kitchen. After the man’s gone, and we’ve consumed a picnic lunch, I decide to head back to mine to get on with the blog. I feel less discouraged than when I first got Pippa’s call. I have lots of energy today. Perhaps the tumour’s already in retreat now we’ve discovered what’s going on and I’ve begun my visualisation exercises, sending my white blood cells in droves to attack the buggar. A bit strangely, however, whatever music I choose to accompany my writing seems to threaten to bring me down. So I tap away in silence for several hours before returning to Anna’s for dinner.

 

As ever, Maddy’s a great fillip. She’s found her nose from Red Nose day at the nursery and we take turns to be clowns while she keeps half an eye on Ben and Holly on the TV. Whenever I hear the theme music I have a strong pang of nostalgia for New Orleans, where we spent three months in the autumn of 2013. We’d downloaded many episodes on the Ipad to protect her from the children’s stuff over there. It was a very happy time, driving Maddy down every morning to her majestic nursery, ‘Kidopolis,’ in downtown New Orleans, before swinging back uptown to Tulane University, where Anna was doing her research on Katrina and I had jammily got myself Visiting Scholar status. It meant we could use all the facilities of an institution so luxuriously endowed that I had a computer in the library to myself every day and access to everything from inter-library loans (each book I asked for, they immediately ordered for their collection, as if I’d caught them out over some shameful secret!) to the amazing sports facilities. The Olympic swimming pool wasn’t fresh water, but salt, just to improve competitors times! Had it been out of doors it would have even rivalled St Girons! Now my nostalgia’s particularly intense. Through my invisible carapace it seems like an impossibly innocent and joyous time. As does our return trip in the autumn of 2014 (pix below) For Maddy’s sake, for Anna’s, I have to believe such experiences will come again.

DSCF2180
Me snuggling up to Ignatius OReilly, one of my favourite literary characters, Canal St, NO Oct 2104
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Maddy prepares for Halloween, NO, Oct 2014. Just the right scary eyes!

 

Anna and Maddy in Storyland, City Park, NO
Anna and Maddy doing stickers in Storyland, City Park, NO Oct 2014

 

Later, Maddy scrawls one of her ‘charts’ on the tiles above the bath with one of her colouring pens. She marks the treasure ‘x’ and then constructs a particularly torturous path to it, doubling back and into knots cross the adjoining tiles.

‘You have to find the treasure, daddy. Just follow the path.’

It looks impossible. ‘You’ve done too many squiggles, Squiggle Bear.’

‘Go on, daddy,’ she encourages, ‘you can do it. Just try.’

She hands me a pen. It seems a lovely omen. It’s exactly a week since the kidney crisis began. So far no sign of another attack, though I mustn’t get ahead of myself. I just have to patiently follow the path which leads to my ‘treasure,’ complete good health.

 

Later, once we’ve played a bit of Rikki-tiki-tavi (the puppet on my right hand) saving her ‘people’ from naughty Kaa of the Jungle Books (my left hand), she falls quickly asleep. After the spinach soup I made earlier and some crusty bread, Anna and I discuss the wedding again. Re-examining the list of music on offer in the Registrar’s booklet, we’re soon in fits of laughter, trying to think up the most inappropriate music we can for a wedding: ‘I can’t get no satisfaction’? ‘It ain’t me, babe’? ‘Thorn in my side’? The theme from Love Story? La Donna e mobile? Somehow my boat has righted itself, after being in danger of capsizing earlier in the day. It’s been an exhausting one. But we hit the hay feeling optimistic again.

Monday-Tuesday 06-07 April: Of Girding, from ‘Loin to Groin’

After breakfast, Anna and I have a discussion about the ‘aesthetics of the blog.’ She’s been reading and commenting on my draft entries as I generate them, in her habitual supportive way. While I’ve really enjoyed the process, and it’s certainly providing a real and useful distraction, it’s also tiring and time-consuming in its own way; and that’s only likely to get more so as the weeks go on. Perhaps, in my inexperience (the only blog I’ve read is hers), I’ve made it too diaristic and tried to cover too much ground. I’ve written 10,000 words in the last few days to try to catch up to the present – a crazy level of output which nonetheless hasn’t got me where I hoped to be. The last thing I want is for it to become a burden.

Anna says she posts something new maybe once a month on hers and she reminds me that if that’s too little for my purposes, nonetheless I don’t have to post every day and I don’t have to be so detailed – unless I want to be. It seems like good advice. At the same time, I want to keep a strong chronological spine to the posts and try to pin down the evolution of events and my reactions to them. So I’m going to try rolling some days up together and see what the results are. This reminds me of the experience of writing the memoir which was published last year. It took quite a while to work out what worked and what didn’t…

 

So what do these two days bring?

 

Monday is my mother’s birthday. She died of bone cancer in 1999, having first had breast cancer in the late 1960s, something which she kept to herself for a good many years (I seem to be taking the opposite tack to her!) She lived thirty years after that first attack, so perhaps that’s a good omen for me. But I don’t want to get to 92, surely? It’s not something I’ve ever thought about. Perhaps I do, now I have a family. How nice it would be to play with Maddy’s children. Her generation will on average live to 100, provided climate change, the disappearance of effective anti-biotics, war, pollution, foolish life-style choices and genetics don’t determine otherwise. Let’s hope she doesn’t leave it as late as I did…

 

When Elliot responded to my memoir, he commented that there was almost nothing about my mother in it, even in the sections of childhood memories of Tanzania. I responded that the book was about my father and my relationship to him; moreover, it was primarily a period of his life before he had even met my mother – India 1938-47. Still his surprise has stayed with me. Perhaps I’m starting to make up for it in this blog.

 

My mother and I had a difficult relationship after my father died, especially in my teens, which I now attribute to her undiagnosed depression following his death in a plane crash in Tanzania in 1965, when I’d just turned twelve. She was left with his three children to take back to England and begin a new life in a country she hadn’t lived in since 1947, where she barely knew anybody any more. Alongside caring for her own increasingly sick mother, she had to bring the three of us up and get us educated. She’d already lost her first husband in the war and, worse, was pregnant with my oldest brother Patrick (ten years older than me) when he went down with his torpedoed destroyer. It wasn’t until I was an adult, and she had long moved on to New Zealand and then Australia, following my younger brother and her friends from Africa, that I began to appreciate what she’d gone through. Although I made several visits out to see her, especially when she fell ill, it was difficult to sustain our rapprochement across the span of the globe. Now I’m a parent myself, I see even more clearly what she went through to make sure we had as good a start in life as she could manage; and the trials and tribulations which sometimes stubborn and wilful off-spring, who almost always know best, can bring.

 

Still, alongside somewhat sombre memories, the two days also bring plenty of laughter. My friend Paul calls from France to offer his kidney again.

‘What, you don’t want it? What’s wrong with a French kidney?’

‘It’s not that it’s French, Paul, but think of how much you eat and drink. It would wither up on my abstemious intake.’

‘You calling me fat?’ He’s a big fellow and makes no bones about his passion for food and alcohol.

‘Well, my friend it would take up a lot of room. Probably more than mine, even with the tumour. I can’t be going for a piss every two hours because it’s squashing my bladder.’

Salaud, I insist.’

‘OK, look at it this way, Paul. If you give me yours, then I’ll have two and you’ll only have one. So I’ll have to give you one of mine. That could go on for quite a while.’

He roars. ‘T’es un vrai con. But make sure you get out to France this summer. We still haven’t climbed Mont Valier together, you lazy ****.’

At 3000m, it’s the biggest peak in the vicinity of St Girons. One summer, a while back, Paul claimed he’d been going up and down it every Friday. Oddly enough, as I like to remind him, that never happened while I was there. But I can believe it. Big he may be, but he’s powerful, too. Think Depardieu with a much nicer nose – and personality. Is it something one could do on a single kidney? Definitely worth a try. I have another goal.

 

Paul with his wife Julie and daughter Rosa, 2014
Paul with his wife Julie and daughter Rosa, 2014

 

 

 

 

 

 

 

 

 

 

I also get several long phone calls from other friends and visits on successive days from two of them. Debbie is a very talented artist, several of whose valuable paintings hang in my flat on semi-permanent loan. She’s also a yoga teacher and I’m going to ask her for some remedial sessions once all this is behind me. She has an extraordinary gift for empathy which perhaps originates in the fact that she lost her father when she was pretty much the same age as I was when mine was killed. Although it was soon obvious that thee was no going back once we broke up, we’ve remained very close friends since and always looked out for each other in times of strife. To my surprise, she tells me that at her exhibition last November, her son Theo remarked that I looked ill. We go over the signs and signals I mentioned earlier in this blog.

‘I think it was just one of those evenings. As you’ll remember, I’ve always had the capacity to look like shit at times.’

We have a good catch-up about what’s been going on in her life, her family and the relationship she’s been settled in for several years now. Very sweetly, she’s brought a lovely grey velvet hand-bag for Maddy. Our little girl will be delighted. Once I’ve cunningly removed the chocolate eggs inside it, it’ll go perfectly with her new favourite dress, the dark purple Merida outfit. Debbie leaves, entreating me to let her know if there’s anything at all she can do to help.

Deborah Lanyon, painter extraordinaire
Deborah Lanyon, painter extraordinaire

 

 

 

 

 

 

 

Equally generous is Sally, who turns up on Tuesday. I’ve known her even longer than Debbie, ever since she was a mature student at Roehampton, where I taught before Goldsmiths, in the early 1980s. Quitting her lucrative career as a TV actress (she was Jenna in the cult SF series Blake Seven), she embarked on the quite different path of studying Shakespeare, Jonson and Hegelian theories of tragedy. She also directed some memorable productions in Froebel College’s gorgeous gardens, making – as I often like to remind her – full use of the rhododendron bushes.

 

She offers to upload a ton of music onto my Ipad and to show me how to use Apple Suite to make simple home movies etc. from the videos I’ve accumulated, in case I get bored over the next few weeks. I admire her tech-savviness. In contrast to most people of our age, she’s not in the slightest fazed by new developments. And I equally admire her adventurousness. She’s just back from a trip to mainland China, on her own, whizzing all over the place by plane, train and bicycle. I particularly enjoy her photos of Chinese breakfasts, which include sizzled scorpions impaled on tooth-picks like spiky satay. An hour or so in her breezy company is a boost and we make arrangements to meet up to do the music.

 

Sally having fun 2015

 

 

 

 

 

 

 

 

 

Once she’s gone, however, I suddenly feel tense. Tomorrow is the big day, when I’ll find out whether I get the all-clear to simply have the kidney whipped out; or whether the scans taken last Thursday have revealed further problems. I spend some time getting up-to-date with Maddy’s diary. Once I’m up to speed, on the first line of tomorrow’s page, I write: ‘The biggest day of the rest of my life?’

 

I think it’s good to have these moments of uncertainty, even if it means I feel like a bit more of a yo-yo than I’d like. They’re a kind of inoculation against the shock of potential bad news tomorrow. Anyway, I’m in a very good mood again when I head over to Anna’s on Tuesday evening. Tomorrow morning we’re going to the registry office in Wandsworth to give our notice of intention to marry. We think it’ll be a good distraction from thinking about the phone call we’ve been told to expect from the hospital sometime after 12.30., when the multidisciplinary team of radiologists, surgeons and urology specialists have finished their morning meeting.

 

Maddy’s on form at the end of her nursery holidays and says she’s looking forward to getting back there in the morning. She loves it at Blundell’s Day-care. She once asked if Anna could find out whether she might be able to get a job there when she’s older. She enthuses about Easter, especially the visit to Clover’s yesterday. She was fascinated by the collection of soft toys apparently abandoned at her step-grandmother’s front door by the neighbouring foxes. It sounds bizarre, but Caroline confirms that these sometimes dismembered objects turn up from time to time and Clover’s decided that, in the absence of other neighbours, it must be foxes. Sounds like a cross between Toy Story 3 and my tale of the three clubs.

 

Today, Tuesday, Maddy’s been out with Anna, her friend Rosa and cousin Tara to the fair on Clapham Common. She did a couple of rides but one made her a little scared and she settled for watching Rosa, who’s many months older, on some of the more challenging ones. Caution is one of Maddy’s characteristics. We’re still trying to coax her onto her scooter and trike more consistently. Anything which involves balance seems to slightly throw her. Anna looks exhausted by the experience and says she couldn’t have managed without Tara’s help. It’s the combination of heat (nearly 20 degrees this afternoon) and having to carry so much tackle for the little ones – besides her own stuff. Like last night, too, we have something of a repetition of the tantrum over the green beans. But on both occasions, happily, Maddy concedes much sooner, as if acknowledging that my purchase of the ‘requested’ carrots has given her little choice. Once in her mouth, she even seems to enjoy them.

 

For three days now, I’ve managed to do without a nap after lunch. I feel I’m walking more slowly, however, and I fall asleep instantly each time I get into bed at night. Yet there’s been no sign of another of the dreaded kidney attacks. Urine remains clear and I feel no discomfort at all in the testicle. At moments I feel quite bouncy, even. That’s another thing I must find out. Should I be doing exercise, or continue to avoid it, unlike me as that is?

 

On Tuesday night, I take up the story of the three fox-cubs and Elsa (last night was Jesse goes to the sea-side to meet ‘Sleep and Beauty,’ Maddy’s name for Sleeping Beauty, which we can’t bear to correct because we find her alternative so cute.) Quite by, I tell Maddy, while they’re out exploring in the forest with Kristoff one day, the fox-clubs stumble across their mother. After lots of huggles and sniggles (Maddy’s words for cuddles), she tells her lost cubs that she scented them at the Ice-Palace but has always been driven away by the resident guardian Ice-monster whenever she approaches. Henceforth Mummy Fox and Elsa will take turns to look after them. Maddy seems to find it a deeply satisfying episode.

‘Perhaps they’ll find their daddy, too, next time?’

‘Following’

For those having trouble ‘following’ me, this is how one friend did it. Let me know if you still have trouble…

‘I clicked the link in your email which took me to the blog with a tasteful wallpaper background, and clicked on the button saying ‘follow’ at the bottom right of the page.’

Sunday 05 April: Of Easter Bunnies

I wake up feeling good. ‘Resurrection Day’ brings bright warm sunshine and Maddy’s growing anticipation. For her, this is much the biggest thing since Christmas. We’re expected at Anna’s family in Balham around 12.30, so we pass the morning in making things for the occasion. Anna puts together an Easter bonnet, with lots of adornments, which our little girl looks lovely in. Then Maddy helps me hand-paint the eggs I’ve boiled for the hunt. She loves painting and colouring and I love the concentration on her face as she carefully adds layer on layer of colour to the eggs. She’s becoming increasingly dextrous and sensitive to colour combinations. Between coats, I blast them with Anna’s hair-dryer and the result is a lovely rippling marble effect with a sheen-like varnish. Perhaps there’s a future career for her with Fabergé. Apparently the best-selling text on Amazon at the moment is a colouring book for adults, which is being sold as an antidote to stress. I can well believe it. I’ve been just as absorbed as Maddy in our joint efforts.

 

We gather our many bags of presents and go down to wait for the taxi. En route, we pass Café Nero and there in the window, reading the paper, is my New Zealand friend Elliot. I feel a pang on his behalf, though I know that he’s probably very happy to be on his own on Easter morning, doing his thing. Maddy gets very excited as we pass the fair on Clapham Common. She’ll be going there on Tuesday with Rosa and Anna.

 

Before I fell ill, I’d been slightly wary of this event. Anna’s large family and I haven’t always seen wholly eye-to-eye and there’ll be other guests I barely know. Now I’ll have to either talk about my illness in front of strangers or not mention it at all. However, once we arrive, I realise that the crisis has produced the same positive results as it’s done with my brother Lindsay. Any sign of the friction we’ve sometimes been prone to seems to melt away in the genuine warmth of their welcome and I begin to relax. Maddy is a brilliant solvent of any lingering awkwardness. Everyone here adores her and gathers round, admiring her bonnet.

‘Mum, has the Easter Bunny come?’

Hearing Anna always calling her mother Caroline ‘Mum’ when she was younger has convinced Maddy that ‘Mum’ is what she, too, should call her grandmother. I hope I never have to one day pick our little girl up from nursery with Caroline, or tongues might start to wag.

 

Caroline is an excellent cook and my appetite’s good, though I eat with more moderation than normal. The conversation’s entertaining. There’s discussion of the notes Ed Miliband left behind before the recent televised leaders’ debate, enjoining himself to stay calm, be ‘a happy warrior’ – in short, to be ‘of the right kidney. I’m dismayed. Is that what he’s going to do before meeting people like Putin or Big Business? But his vulnerability also engages me. Behind his occasionally robotic demeanour, Ed is human and humanly awkward. And most of his ideas are sound.

 

Particular fun is bantering with Anna’s younger sister, Gemma, a pretty aspiring actress who, despite her undoubted talents, is struggling to kick-start her career. Gemma has a new girl-friend, Georgia-May, who was supposed to be coming for Easter lunch, too. However, Georgia-May’s phoned to say that her mother, a hair-dresser in Leeds, has offered her a free colouring for Easter. Hence she’s going to have to catch a later train. Gemma is pretending (I think) to be annoyed. But there’s no doubt she’s more excited than disappointed because at least her new squeeze is still coming. She wants us all to stay until early evening to meet her. She furtively shows me Georgia-May’s picture on her Iphone, carefully shielding it from the others. I feel honoured. Georgia-May’s extremely pretty and I congratulate Gemma on her taste.

‘Can I see the rest of your Grindr account?’ I ask slyly.

Gemma looks appalled. ‘Please! That’s for gay men.’

‘Ok, well your Tinder account then,’ I counter, hazarding a guess.

‘Datch, actually,’ Gemma responds with a smile. ‘And no bloody way.’ It’s an open family secret that she had three dates on the go until settling recently for Georgia.

‘Come on, I promise not to tell Georgia-May.’

‘Isn’t Datch for gay and bi people?’ someone asks.

Gemma nods, a little glumly. ‘Georgia-May’s bi.’

‘In that case, I’ll definitely stay on to meet her,’ I joke.

 

Maddy, meanwhile, has disappeared from the lunch-table with her cousin Tara, who’s just entered her teens. Despite that, she’s brilliant with Maddy, infinitely patient and willing to play with her; and as a consequence, our little girl adores her. As a range of delicious-looking desserts arrive, she returns, looking resplendent. They’ve found an old drawer of clothes and fished out a bridesmaid’s dress which Anna wore when she was five. It fits Maddy pretty well; and they’ve also found a kind of orange-red lace throw which is now round her shoulders. With her bonnet and a basket to collect whatever the obliging Easter Bunny has deposited round the garden while she was in the other room, she’s gagging to get on with the main business of her day.

 

Dessert finished, Maddy heads straight out. The goodies haven’t been hidden with any great thoroughness and our little girl whizzes round, hoovering up everything she can find, until her basket’s overflowing.  A budding May Queen. I head back indoors quite soon, unwilling to be in the sun too long in my present condition. Anna follows and shows me a photo of herself when she was bridesmaid age. Startlingly pretty, even then; and how much Maddy resembles her – colouring, shape of face, lips, hair. Sometimes people say our little girl looks just like me and they can’t find any of Anna in her. They should see this photo. Other than her brow, and the grey-blue eyes which have skipped a generation down from my father, I can’t see too much Moore-Gilbert in her at the moment.

 

Hunting for Easter day treats. Gemma (left), Maddy, and Maddy's cousin Tara (right).
Hunting for Easter day treats. Gemma (left), Maddy, and Maddy’s cousin Tara (right).

 

 

 

 

 

 

 

 

 

 

 

 

It’s been a lovely day but I’m getting tired. I find myself slipping into a slightly strange but not uncomfortable state which has overtaken me once or twice these last few days. It’s like being cocooned in a translucent carapace which allows me to enjoy reality but also keeps it at arm’s length. Almost like the state of meditation. I guess the diagnosis still hasn’t properly sunk in.

 

Before we leave, Tara and Gemma want to do a musical performance for Easter. Tara has got much better on the piano and it’s always a pleasure to listen to Gemma sing. Afterwards, Tara puts Maddy on her knee and gets her to press the keys, following her own fingering. A very passable tune comes out but as if with an echo. I feel we’re witnessing her first musical performance and she’s loving it. Oh dear, I think we have another arty person in the making. All my efforts to get her interested in Lego building blocks and miniature medical equipment, in the vague hope she might become a doctor, an engineer or scientist, could be in vain…

Doctor Maddy in her consulting room. Future kidney surgeon?
Doctor Maddy in her consulting room. Future kidney surgeon?

 

 

 

 

 

 

 

 

 

 

Soon Jonathon, Caroline’s partner, kindly drives Anna and I home. Maddy’s having a sleep-over in Balham before the family heads down to Jonathon’s mother’s place in the country for Easter Monday. Once home, we make fried eggs on toast. I’ve neglected the fridge these last few days. I have to find out about diet. Perhaps my unusually pronounced craving for chocolate over the winter was the tumour making its demands felt? The internet, which I’m trying to avoid as much as possible in terms of managing my illness, for fear of (contradictory) information overload, is predictably inconclusive when Anna searches. Some say avoid sugar and fat, others say it makes no difference.

 

Despite our pact, we’re both a bit down. This time last week, we didn’t have a care in the world, beyond deciding dates for our summer holiday in France. And now everything’s on hold. Waiting’s the most difficult part. We’re only half-way between last Wednesday and next, when we should know the full truth. I wonder when Goldsmiths will be able to get back with a response to my request to postpone my retirement date in order to go on sick leave and resume my fellowship once I’m fully recovered. There’s nothing to do, we remind ourselves, but keep calm and stay steady. Poor Anna’s very tired. I know this situation’s putting an incredible strain on her, even if she doesn’t complain. She can hardly keep her eyes open as we watch Ajami, a noir Israeli/Palestinian co-production about the dark underbelly of modern Palestinian Jaffa. Despite my resolution to avoid anything to do with my research project for the moment, it’s the only thing I have which neither of us has seen. It reminds me a little of Gomorrah. Beautifully acted, it’s nonetheless incredibly bleak. When Anna finally falls asleep at about half-nine, I’m relieved. I can postpone watching the rest of it to another time – perhaps when I resume my fellowship.