my drug collection

I am back on them big time. So far no puking, thank goodness, I just feel a bit odd and my brain is addled. The drug regime is super complicated. As I said in my last post Arthur has set up an app that schedules everything but until I am used to it I check everything by hand. I spent about half an hour yesterday fussing about the dosage of one of my usual drugs, not a cancer one, that my addled brain claimed I have been getting wrong. Slightly panicked I was convinced it said “take once a day” half the dose I had been taking for years but after contacting the hospital and preparing to message my GP I reread the instructions and the mind mist momentarily cleared sufficient for me to see “take twice a day.” I honestly must have misread that 10 times. Duh.

Anyway as an aide memoire as well as an insight into what is involved in oral chemotherapy for the modern obsessive list maker here is my quota. I am on this lot for ever as far as i know or at least until they stop working – so i had better get used to it

Co-Trimoxazole – an anti bacterial – don’t know why it prevents something 2 tablets M, W,

Aciclovir -avoiding shingles – 1 tablet twice a day

Allopurinol – stops your kidneys getting mucked up 1 tablet per day must be with meal

Ixazomid – forbidding name for scary Cytotoxic – only one tablet per week and each one comes in its own little folder booklet thing – individually wrapped – must be on an empty stomach

Lenalidomide – another Cytotoxic – one tablet per night – makes you sleepy

Dexamethasone – the magic steroids – 20 tablets on one day per week – makes you wakey-wakey

Bisoprolol – beta blockers – slow my heart rate – 1 tablet per day

Omeprazole – 1 tablet per day – protect my stomach from all the other nasties being poured in it

Apixaban – blood thinner – critical for some reason with this type of chemo but i was already taking them

Atorvastatin – a regular statin (BORING)


Nothing but moaning

This post is just about being ill as writing about it makes me feel better – read at your own squeamishness risk and degree to which you can endure moaning.

Spent a bilious 5 minutes on the bathroom floor again, happily overseen only by my loving wife this time. She made me a towel tent with a flap from which to observe her concerned comings and goings, Lawrence of Arabia style. Did I want a glass of water? Groan. Was I feeling any better? Groan. Did I need anything from Waitrose? Groan, Groan. (Not really) Having been on the floor before I was at least able to reassure her that the near death experience would pass in about 20 minutes, which it did, but only after I had attempted, yet again, a reprise of the infamous crawl to the oasis (sofa) routine. It was going quite well when midway it was interrupted by the sudden and alarmingly rapid downward trajectory of my stomach which necessitated, in mid crawl, an advanced driver Sweeny-like three point turn back to the bathroom. Meanwhile two cats had decided that this was just too much fun and so I covered the ground using a grand total of twelve legs, eight of them furry.  Oh how we laughed. NOT!

So I have resolved baths are out, showers are in. I have never liked showers preferring to wallow in my own putridity but I am resigned to having to master the absurdity of bathing vertically. Our shower is a gravity fed head over that bath which is another way of describing a system as far from a power shower as imaginable. It came with the house along with all the other botched features installed by the previous resident, ironically a woodwork teacher. His claims to fame included plastering over an external door rather than removing it. He even put a patch of roofing felt over the letter box. He also bequeathed a splendid set of bookshelves made of hardboard, yes hardboard not mdf. They formed inverted rainbows before they fell off the wall.

My numbers are nearly at the target of 30 somethings!!! With mounting enthusiasm my consultant has recommended a last sprint for the line and I am now on a double dose of thalidomide as it’s ‘going so well’ and frankly I can tell the difference.  It is like a fairy tale sleeping draft. I expect to wake up as a frog or in a castle cellar spinning straw into gold. My consultant describes it as ‘making you a bit sleepy’ I would describe it as stage one Dignitas. Anyway, somewhat amusingly, I had not had the sense to move the dose from first thing in the morning to last thing at night when its sedating qualities would do less offence. He was most amused by the fact that I had endured falling asleep into my Lasagne bowl (Garfield reference) every morning at 11:00 am for a month.  So it’s a bit better now but I am still a lazy bastard and it does provide a convenient excuse for lazing about.

Due to my tendency to topple the zimmer frame is back from the loft. Not exactly a welcome return but I have a strange nostalgia for her spindly presence. The last time she and I danced together I was really ill, (it was right at the beginning of all this) in quite a bit of pain and seriously immobile she ensured that I did not end up in nappies.  So at the moment Nonna and I compete for the least mobile inhabitant of AR. She’s winning by a country mile by the way. (What is a country mile?)

I have a whole bunch of cardiology appointments in November that I am very pleased about. All routine processes, connecting monitors to me to try to diagnose the fibrillation issues. The trouble is that as you know from all my moaning, the chemo drugs also cause palpitations and dizziness so I am experiencing a perfect storm of symptoms at the moment. I hope that does not confuse things because It would be great to get some bit of my failing body fixed. I look at myself with some disdain. I am super-duper unfit. At the royal free there is machine that sort of scans you Star Trek fashion and gives Dr McCoy a summary of your fitness. The results indicate a non-human potentially alien presence with such a freakishly bad BMI and legs seemingly not robust enough to support the weight of the torso that I am surprised they don’t ship me off to Roswell.

My capacity to do anything useful at the moment is zilch. On the other hand my passion for doing useless things remains unabated. More on that another time.

To sum up. I have been on the chemo for quite a stretch this time , it has not been that much fun but I am delighted that it works. I have been very lucky as I gather it doesn’t always work in all cases which must be very frustrating for those poor folk who endure all the symptoms for nothing. So far everything they have thrown at me has had a beneficial effect. I assume that once they have used one drug they can’t use it again as the body becomes resistant, but never mind, I gather there are still lots of options up to and including more drastic things like stem cell transplants. No need for any of that just now as my latest numbers have only been surpassed once since I became ill so I am very happy. To give you some context – When I was first diagnosed by bad thingies were over 1000 (beyond the capacity of the measuring device), now they are 33 with a target of 29, so despite the moaning, and I do enjoy a good moan, I bloody well should be happy!

In my crossest moments I confess I agree

“I’m exactly the opposite of religious, I’m anti-religious. I find religious people hideous. I hate the religious lies. It’s all a big lie”, and “It’s not a neurotic thing, but the miserable record of religion—I don’t even want to talk about it. It’s not interesting to talk about the sheep referred to as believers. When I write, I’m alone. It’s filled with fear and loneliness and anxiety—and I never needed religion to save me.”

Phillip Roth

A newly Nutriblasted druggy

I miscounted its 34 pills – What is it like to take 34 pills each day I hear you cry. Well surprisingly annoying given that most of the tiny buggers are in individual blister packs. After squeezing out so many of them and retrieving quite a few from the floor (we don’t want vacuum cat on chemo) you actually end up with thumbnail ache – yes really. Then there is the consumption. No sorry an important overture. The reading and rereading of the dose because the days, dose and frequency can all vary. To a ‘Bear of little brain’  in the past this has required a spreadsheet compiled by her loveliness after i overdosed twice – but this time I am managing – so far. Consumption. In movies people throw dustbin loads of drugs down there throat and then wash it down with half a glass of Johnny Walker. I have a pint glass of water and another emergency one standing by. Chemo drugs really don’t taste good if they dissolve on the tongue. I am very woosie about taking them -I have to get into the zone before each batch. Its funny – if you think about swallowing you cannot, its the reverse of yawning. 

Must be a record. It’s 1:30 am and I am ready to run about – like the lambs I mentioned in my last post – that I am getting slightly obsessed by. They are so deliciously jolly it’s so sad. My vegan, vegetarian family and friends are so right – they are too nice to point it out but i am left asking myself, why am I so lazy, so stuck in the post war diet of meat and two veg that I cannot, cannot, cannot retain the sense of loving lamb care, beyond the flash of tiny white sprung wooliness that I observe in the fields, from the car window, on my way to buy some chops at Tesco. Anyway I have taken one tiny step. We have a Nutri blaster.

This is really just a glorified blender/pulveriser murderer of fruit and veg, designed in California of course, that makes it easy and fun to make and consume fruity and veg smoothies. Basically you drink it straight from the cup you blend it in. Hence reduced washing up and mega fresh. I suppose in theory you could pulverise clotted cream fudge sausage and Toblerone but you do need some liquid, so I guess that would be cream soda, but I digress – it makes consuming the things that woolly things graze on, as attractive as the woolly things themselves. It was inspired, nee purchased for Lisa who introduced me to the concept and my certainty that I would not like it’s output, is now matched by my certainty that it might be a personal dietary game changer for yours truly. I am a fan – big time.

Three things spring forth from this revelation. 1. I eat an incredible amount of good food. The Italian diet from Maria’s area is world renowned for health 2. I partner this with an incredible amount of bad food – for example – an entire tin of ambrosia creamed rice with jam (cold), Shreddies with double cream, a packet of Jelly Babies (jeez that make you feel sick – Nonna has them for an emergency diabetes fix – she calls them baby jellies – I find that so cute ), M&S stew and dumplings, Tesco knickerbocker glory ice cream cones, Werthers originals (not sugar free), Refreshers, Parma Violets, Caramac, Ginsters anything, MacDonalds (although the last one was my last) and  DONT LOOK…v..e..a..l. !! a habit picked up from Italy (reason enough to applaud Brexit) – from the health point of view I might as well be consuming John Players No6 cigarette sarnies. (btw i bought an empty packet of ten from Ebay – still looking for Consulate and Silk Cut) – Also I love animals insanely. I drive family mad by stopping in fields to admire cows. Pigs make me swoon. I thought I had run over a rabbit a few nights ago – i was really, really upset. I seriously contemplated getting out a rushing it to the vet (i didnt of course – dark expensive – scary – gruesome). This despite the fact that the cats regularly bring in a crudely amputated leg or a tail and it really doesn’t bother me.  So I am resolved that during this bout of chemo I will occasionally give the cuddly animals a break and my body a Nutribomb treat without depriving it of some of the other life enhancing but slightly bad goodies it has been accustomed to like Caramacs (seek them out if you haven’t tried them – a bar of hyperactivity and subsequent vomiting – no i am not joking – i did when i was about 7). The doctors wont approve – chemo deserves a good stuffing – i will never forget the nutritionists advice – ‘eat lots of everything.’ Actually i am trivialising her advice the key thing was lots of EVERYTHING – all food groups – not just lots of eclairs (they must be M&S btw – its the bitterness of the choc, trust me).

3.– gadgets are good. Without the nutribucket I would not be arsed with my partial detox, without this iPad (no clicky keys to disturb the beloved in bed) you would not be reading my pearls, without Facebook I would not have laughed at the the picture of an advert for recorder lessons with a tear off row of ‘no thanks’ (the seeing is better than the explaining I think one of my nieces posted it – so ask her). The fuss we make about digitisation being bad for you is not the fault of the digital gadgets themselves or their inventors most of whom seem to be cast as megalomaniac villains when the reality is simply that they are super smart at making stuff work. The villain in this case is the creed that we have had shoved down our eager throats like spring baby birds that the Market is the only way the worlds appetites can be sated. The market creates unnecessary desires which the Mark Z’s of this world satisfy. Without it it is highly probable that my nutribottom would not be on the kitchen surface but then again, the Shreddies and tinned rice pudding wouldn’t be their either so I wouldn’t need it.

My boys and girls are having lovely lives. Two of them appear to be writing brilliant things while dog sitting. The dog should be very happy to have them as they looked after seven mixed mutts in Spain so they are not your average incompetent lazy dog sitters. Anyway I have seen a photo and it is lovely and scruffy and not too big for the flat. The other two are completing an album, well one is and the other appears to be finding any excuse to wear his new suit. They do posh hotel gigs two nights a week where nobody listens, but it important that they look good enough to listen to should anyone look up from their lamb chops. Still I have heard bits of the album (funded in part by the non listeners) as work in progress. When it is out I will be insisting that you, my lucky readers, buy it. It is exceptional even in it incomplete state.

I am not even the tiniest bit tired. An hour has past. I think I might get up and make a cup of tea. It’s great that it doesn’t matter a jot as I am on the Easter break. Btw I gather that it’s almost without doubt that Jesus lived and died but as the Guardian reported the jury is out as to whether he died and lived. He didn’t by the way. I know this and so does everyone else. I think it would have taken less than 40 years for the first record of him having done so to come out. (Better than King Arthur though, that took 400 years). Imagine if twitter had been around then. We would have mobile footage of empty tombs and photoshopped stigmata. Apparently according to some mate of the pope, the pope has decided that hell doesn’t exist. All the bad people just disappear. Hope he is right as I am skating on thin ice knocking the son of the principal architect of the concept. Or was he? Theologians in my readership, did God make hell during those busy seven days (blimey was it seven I must read the story again ) of was it already there before he started? Boy and we think fake news is new news.

Tea time at 2:45 am.

So that didn’t work – i responded to some great work by my brother-in-law on nailing down a national education strategy with an anarchist diatribe about why we don’t need compulsory education at all – another one to be ashamed of later and added a load more stuff to the above. It is now 4:45 i have fed the cats and Mitch is keeping me company.

Talking of shame. In reconfiguring my blog I found myself reading through some random posts stretching back to my first diagnosis in 2014. Some were really quite good many were excruciatingly pompous – around about the Charlie Hebdo era I really excelled in the bogus revolutionary fervour – in another 4 years I will be embarrassed by some of tonights stuff I am sure. I was tempted to delete some of the posts but I think that would be cowardly and vain so i am patting myself on the back for courage and leaving it all to posterity. Maybe some psychology student in years to come will write a thesis on me and my presumption that anyone is listening or wants to listen to my nonsense. To top of the shame theme during a recent trip to Luigis my family dug out a poem I wrote a few years ago while in the state I am currently in (i hope-  goodness goodness i hope i was stoned). I cannot bear to reprint it here but it really is the worst poem ever written by anyone about anything. If only my intention had been a post-modern appropriation of kitsch but no, at the time I meant it. It is called Panetone Cat and can be found here http://fleet.universitylecturer.net/ – but you will have to search in the search box. Maria nearly wet herself when Arthur read it to the assembled. It is to be read earnestly at my funeral. That is assuming the pope isn’t wrong it haven’t disappeared. Oh but i will have done?


29 pills and a day fiddling

I took 29 pills this morning so i am feeling weird but good – no doubt you will hear from me again at 2:45 am – but in the meantime i have spent the day preparing my blog for a new spate of juvenile outburstings – it is now hosted externally to alleviate the pressure on my lamb powered broadband – yes they jump up and down to generate enough bandwidth for more stories of our cats.

so this is a test – perhaps you could let me know if you get it – and the reminder link – and the tweet.


My tubes

Our outing to the Royal Free passed without incident. As expected I will be back on the drugs in a week or so. Something called ‘Mel’ I am told. Presumably not after a Spice Girl – it’s one of the old-fashioned cell killers, bit of a classic, the Burberry Mac of chemotherapy. Everything bodily was fine and stable and that is the important thing. Heart is in good order (somewhat to my surprise) kidney function fine, liver flexibility fine – they use a bit of sonar kit that gives your liver a thump and then listens for the echo. You have to try not to jump. My body fat is gross but no one seems to care. One of the nurses was telling me how busy they were getting. What was once one nurse assigned to delivering the plutonium or whatever it is, is now four. My trip through the scanner alone would cost £7000 per go if I was not a UK citizen. I am seriously fortunate. Who knows what the effect of the new drugs will be. As long as they work I don’t give a shit.

Maria and I kind of enjoy our visits. One of us is usually taking on the anxiety while the other is away with the fairies. This time I dedicated my time to getting scared while Maria knitted. In the past she has been hyperventilating while I have been dreaming of butterflies. It is always one of us. The fact that she always comes with me and puts up with my mood, which fluctuates between sombre and downright cruel, should be a for trigger incredible gratitude, however this only ever emerges on the way home – when the bloody thing is over and I can breathe and eat. (Ever since Olivia Hussey in Romeo and Juliet took the unfortunate sleeping draft, anxiety brings about an instant cessation of eating). So I always gush my gratitude on the way home on the tube feeling like a complete wimp.

The environment at the NAC is set up to be quite scary. The lift suffers from Alzeimers so it its very slow, forgetful and doesn’t arrive when you call it. It seems to know you are anxious and enjoys prolonging the agony by providing a guided tour of level L1a and the service zone before finally releasing you at UL3. At UL3 you are greeted by a doorbell into the Amyloidosis Centre which challenges you to ‘Wackamole’ – can you get from bell to door handle before the door locks again. There is normally a stream of knackered ill people waiting for taxis or bottles of wee. We all wrap wee bottles in plastic bags thus maintaining the illusion they are actually wine boxes and we are just off to a 1980’s dinner party for the undead. The staff are fantastically nice – not so the patients. The fact that some are, as it were, on their last legs does not give them the right to be moany or unbelievably boring. One woman entertained the crowd with an account of her glasses fitting in ‘Boots.’

Yet again my sound system for my scary tube ride failed me. I had downloaded ‘late night woman’s hour on ‘parties.’ All was well and I was soaking up the audio rays lying on my gurney – sadly my hyper efficient Romanian technician re arranged my iPhone at the last second and I was fast forwarded to the play out music (sleepy lagoon) from an ancient episode of desert island disks. It was too late to make a fuss, the Romanian was also quite stern, I remembered her from the last insertion, and I was too British – so yet again I lay in silence contemplating 30 minutes of grinding, wiring and a barely audible Mozart piano concerto 21 (the slow movement) – they don’t know that most people of my generation associate this music with a Swedish film from the seventies about bitter sweet love and suicide, hardly fitting for a journey, which other than the absence of the red curtains and the oven is remarkably reminiscent of ones last. Anyway happily after 10 minutes the next podcast must have automatically downloaded and started to play. A more recent episode of desert island disks – and yes I had heard it.

Still – it’s over for another 6 months hurrah!

61 and nearly dead

I am the hospital for a routine eye test for glaucoma so plenty of waiting time to compose a post.

As you know, dear reader, I disapprove of birthdays. I find them a bit of bore. That frigging repetitive greeting, the ghastly cards, the obligatory happiness, the cake, the meal, the pressies are ok, but in my view the whole birthday thing ruins a nice day, during which, with luck, the people you love are knocking around and you can party!

In an effort to address this I moved my birthday to Boxing Day and assimilated it into that other day that annoys me that begins with X. Anyway we had a brilliant family band session in the village hall with all my lovelies participating or enthusing. We managed to avoid all the tiresome birthday prerequisites and at sixty one I felt young and rebellious and ready to rock. Maria and I sung a duet – I was Robbie Williams to Maria’s Nicole Kidman in ‘Something Stupid’. I was brilliant, atleast in my minds ear. Relaxed, smooth, characterful with just a pinch of ironic twinkle! –  Footnote – I was not – I have a recording – starts ok – then a  sort of bee-gees virus afflicts me and as I ascend to ‘staying alive’ heights my tuning goes into first-day-of-the-Suzuki-violin-method-for-a-four-year-old zone. In an effort to correct this I step off the pitch cliff edge arriving at notes, less bat-like, but no less terrible. But it was fantastic fun and an opportunity to show off my new very posh birthday bass amp. Thank you Maria

Listen to this first – (no its not us) – I adore this song and this performance.

Now you can read this

Sixty one is definitely old. I am not a sprightly pensioner in slacks springing from one three peaks race to a triathlon followed by a yoga class. I am old knackered with an elastic waist band balloon belly and very proud of it. Our compulsory worship of those oldies that ‘survive’ as if they are an endangered species of marmoset really annoys me. The old are currently messing things up for the young and the sooner they bog of the better. Except me.

Speaking of bogging off and given that I am writing this in a hospital which is traditionally ‘the last port on ones life cruise,’ when I die I want to be a tiny bit useful. There seem to be two choices that appeal to me. One is a new machine that liquifies and blends bodies with a sort of bio yogurt and then flushes the result into the sewage system or sprays it, silage like, onto the fields to enrich the next crop of edamame beans. It is such a grotesque idea it appeals to my sense of the absurd and my reluctance to endorse the idea of dignity in death. Being dead is not anything at all – it is certainly not dignified.  Being blended in a juicer and flushed down the lav or sprayed about like a goolish jet wash sounds like a Steven King outtake. However the idea smacks of ‘green’ conscience and that is something I would struggle to claim. My Auntie Barbara worked in a hospital in a cancer department. She died of the disease and being an insider she donated her body to ‘the cause.’ This seems like a good thing, besides given the rarity of my condition I reckon the medical students will be racing for their scalpels.

Nonna has a different attitude to death. A recent brush with a stomach virus not only elicited (from us) an obsessive installation of video cameras around her house so we can see her if she has a turn (she was very poorly) (she has been warned not to disrobe, as is her habit, on the landing) but also the purchase of two sets of in-the-coffin footwear from Amazon Prime. Both in black. One styled for winter – more robust, less slippy on the ice and the others, sandals, for summer, black but strappy and cool. While Maria and I appreciate the need to have the right footwear for every occasion the price, £70 for each pair for just one wearing, did seem excessive. Still it makes her happy and us laugh – privately.

Eyes in excellent nick – huh – good – home I go.

When we go strolling in the park at night
All the darkness is a boon
Who cares if we’re without a light
They can’t black out the moon

I see you smiling in the cigarette glow
Though the picture fades too soon
But I see all I want to know
They can’t black out the moon

We don’t grumble, we don’t worry about a lot
Oh, when will you stumble, you stumble into my arms
And when you kiss me, don’t you realise
That my heart’s like a big balloon
And like the lovelight in your eyes
They can’t black out the moon

The last 6 months or so in some sort of order

Family – I could not be happier with everything they are and do. Punch my face in I am so f*****g smug! I adore them all.

Wedding – I adored that too. Selfishly, I, yes I, felt very special

Cats  – Vince is obsessed with me – which is flattering but tying. If I am at home for a day he glues himself to me like we are training for the Crufts cat ‘heel’ awards. He still lies on the keyboard and pats me as I type. I adore him.

Health – I am really not bad, better than I really would have imagined a year or so ago. I have managed work very well. I am a pathetic old man going up stairs – I actually dread them – but that may due to the extra belly load of fat I carry. My diet is EAAAAT “eat anything at all a lot”  my at rest pulse rate hit 130 last night – not good – so self-medicated and it’s just got back to normal – hurrah for beta blockers.

Sir Peter Hall. On the night he died and before it was announced and for the first time ever I was googling him to find out what he was up to. He was always incredibly nice to me and tolerated my complete ignorance of most things clever. I was an excellent assistant to him and he was an excellent mentor. We shared many a big breakfast at a greasy spoon in Brixton discussing Shakespeare’s verse. Yep for real.

Politics – I am more convinced than ever that I am right. The End.

Religion – see above.

Donald Trump – I hate myself, why do I wake up every morning and rush to read what he has done in the night. It really is like looking down the toilet after a big dump – you don’t learn anything, you are just disgusted – oh ever since being ill I have become very lavatorial (to those that are offended I promise to find better metaphors) but in this case it really is the most fitting.

Lights in the kitchen – must be bright – moody kitchen lighting results in last minute fumbles for reading glasses and burnt toast. I believe our kitchen lighting totals about 500 watts now. It’s like a sunny beach. Not the place in Bulgaria where Arthur dropped his kegs and danced on a night club bar btw..

Bass playing practice. Sporadic and depressing. How can I still be so bad after so long.

My students – some seem to like me quite a lot – why does it hurt so much when they don’t ? After all I am so nice. Got it! I am very opinionated – some people hate that. Reminder to self be bland – nah. I bought a small group of them coffee – they seemed really confused. In the midst of all this one possible significant creative flowering, I hope – she’s lazy though. Suppose that could be good sign?

Poetry – none

Short stories – none

Ridiculously complicated set ups consisting of computers and what not. – one

 – did it work – not really – were the students impressed – not really – was it worth it – yes – I even made the collapsible table to show it all on.

New lighters – 2 or 3 – one Japanese one on its way. It is on off pink shade with a silver poodle on it

Serious discoveries. The work of photographer Julie Blackmon (below). Grew up in a massive family in the mid west I think – now has loads of children of her own that she photographs in surreal scenarios that are both silly and frightening. I treated myself to one of her very pricey books.

Disappointments – still have not done my chemical photography despite getting the kit for Christmas 2 or was it 3 years ago. Both my girls are keen to have a go but we never get it together – right!! this Christmas maybe.

Strictly Come Dancing – best thing on Telly except Peaky Blinders – why do we continue to under value light entertainment – this show is superb – brilliant presenters, dancers, choreography, music lighting and a great concept. I know I know I am always on about it.

Fizzled out


Julie Blackmon

Art, cats, drugs

Our lovely Arthur has graduated from Guildhall with a splendiferously high 2.1 – (67) with, as you know, firsts for all his performance exams. We are so proud and delighted not least because his enthusiasm for the academic bits (eg the reading and writing stuff that Universities insist on even on performance courses) was at best patchy and a worst absent. Brilliant Arturo!!

Other good news is the cats have stopped pissing. One can only assume that three eunuchs are temperamentally more collaborative than two eunuchs and a tom… and finally my cancer numbers i got a couple of days ago have actually improved just a bit. This has happened before but it is a rare event when I am not on any drugs, so were the trend to continue, one might be tempted to ascribe it to the daily faddy, herbal, nonsense curcumin supplement. Either way down is definitely better than up and means no drugs for the forthcoming wedding festivities which I am so, so, so, looking forward to!!!!!!


Health +

Much to my delight the results from the National Amyloidosis Centre are really positive this time. The amount of amyloids in my spleen has decreased dramatically. I assume this is down to the thalidomide but it could of course be god’s will. If it is, he surely needs to go back and check his balance sheet again. He really does not owe me. This is actually the first time that my amyloid results have improved since getting diagnosed. The  consultant says it’s a very positive result. The light chain numbers continue to increase slowly but she says they may stabilise at a low enough number. Either way, for now, no one appears to be recommending any extra treatment so hopefully I shall be my full on, vibrant self for the wedding. We will be celebrating tonight by sitting in the loggia with a large glass of expensive Italian water mixed with expensive fruit something called Juicy Water (ooh it’s refreshing)  with our three cats gleefully fighting and weeing twix Maria’s Mediterranean plant collection.

The visit to the NAC was a bit of a nail biter this time just because I had got in my head to be worried. I had no medical reason so to do but I did not want to the sort of negative news that would mean more treatment and thus feeling ill at the wedding. Our delightful new family (the extended part) have only seen me at my least well and least sociable, probably leaving the impression of a surly, sulky, boring git they hope not to be lumbered sitting with during the ceremony. I really wanted to be able to show off my life-and-soul of the party, proud father, performance in August and not the revival of the slightly bilious, vertigo ridden, grey faced misery of my last showing. Fingers crossed my other consultant does not recommend gilding the lily. For goodness sake I am well enough let’s not go for gold plated well.

When I get anxious I talk, lots. So during the tests I had a great time sharing jokes with an extremely heavily accented nurse. He started off very circumspect but as I responded with clear glee he became more and more confident and outrageous. His intonation communicated the moments when I should laugh and I dutifully did. By the end I really had no idea where we had arrived. I know we started at how hilarious it would be to get patients to race each other up and down the corridor but I believe we ended, I may be wrong, with something quite surreal about Hoxton. Anyway when he tested my blood pressure it had shot up I did not have the heart to say it could have been as a result of my efforts to hang on to his  joke. What a great and positive asset to the NHS he is though. I hope I get him next time.

I also talked at length to another nurse about box sets. It was prompted by her American accent which she said was a result of watching too much TV. She was a big fan of House of Cards. We chatted over this while she greased my nipples and probed me with a gadget that takes photographs of my heart. I am sure my preoccupation with waxing lyrical about Kevin Spacey’s to-camera moments helped produce the really  good heart results reported by my consultant.

My third encounter was with my regular Romanian nurse who deals with the radio active stuff. She and I have quite a thing going about the Romanian education system something I know something about having had a Romanian friend and colleague at the university. She is deeply unimpressed by our education system – she could take little comfort from me, as all I could do was agree it was crap.

My radiographer was Australian and she had only just arrived. I apologised for the state of the country. She thought I meant the hot weather, she said it was much too hot. Is there a cold part of Australia cos she must have come from it?

This time my consultant was my favourite one  with the most wonderful bedside manner. Totally charming. Her parents are Indian. Needless we had lots to talk about regarding weddings. Hers was very small scale, only 150 so she was very impressed with our forthcoming one and wants to see photographs. Her mum had wanted to bring back loads of turmeric from India. She had heard about the recently discovered  miracle cure for myeloma ( the other thing I have)  using the  essence of turmeric (forgotten what it is called again) but her face betrayed scepticism when I showed her my £50 bottle of snake oil brought from Amazon. Still I keep popping it even if it does turn your wee orange.

Anyway – that’s over till February. Both of us get stressed but when we get good news it is worth the stress –  and looking back at the whole event, in a sunny lovely part of London, it feels a bit like we have just been on holiday.

I started writing this on the train. Now we are home and yes three cats gathered, yes I have  my drink and so far at least no weeing or fighting – the cats I mean.