Sunday, 19 July 2020

Prostate Cancer Notes Chapter 3

It's on my conscience that I haven't blogged for a while. People have been asking how I'm getting on with the nuance that at one extreme had I died; or at the other, had I totally recovered and just forgotten everyone. Well mercifully, neither. Certainly while my treatment was ongoing, there was a long period when I felt no motivation to do anything at all apart from drag myself along to hospital for the treatment itself. However, it all needs to be said. This is for Fellow Man more than for me, after all. Apologies now for having to go back a year, but at least you are getting the bits that have been remembered. As before, this blog does discuss medical topics in a frank straightforward way. As before, the [get-outa-here] button is available to you.
It's not just remembering bits of course. The bits are the easy bit. Some of the important bits aren't actually bits as such; they are the feelings, such as “Why is it taking quite so long to get shot of this catheter?”. That was, for me, worrying because you can't have radiotherapy done with a catheter in; and you can only have the catheter taken out once you have shown that you can pee normally. Because I had grown a large capacity bladder because the enlarged prostate was squashing the plumbing, it took what seemed like forever.

Aug 2nd 2019: The TURP surgery
Any surgery under a general anaesthetic is gong to be a risk, an invasion of one's body. I remember as much as  anything else, feeling relieved that at last things were moving again. Considering what the surgeon actually does, it's fairly surprising that the effects aren't worse. Access to the prostate is achieved by inserting an instrument into and through the urethra with an electrically heatable wire; the hot wire being what does the cutting. This of course was only the prologue to actual cancer treatment: a necessary prerequisite job to slice a piece out  before they could even begin to administer any radiotherapy. The configuration of the male anatomy being what it is, obviously it's all done under general anaesthetic so no pain involved, just the realisation that bing fitted with a catheter was the new normal. And yes, one does get used to it. Being told that one would die without it helps the issue of acceptance of course. It did seem to be a very long time between the TURP and the radiotherapy.

Aug 20th TWOC (Trial With_Out Catheter). That's a day when they remove the catheter, get you to drink plenty of water, and see if you can empty the bladder by peeing normally. The residual volume being measured using an ultrasound scanner. Ideally the residuum should be less than 100 ml. Alas mine wasn't which was a disappointment because I really wanted to be catheter-free before…
Aug 27th – Sep 3rd. A trip to France with close family. I had carefully rehearsed what I might have to say to Airport Security, complete with a copy of my letter from Addenbrookes. Mercifully, there was no body search requiring me to remember expressions like sonde urinaire avec petit robinet, traītement contre cancer de la prostate.
Sep 12 Another TWOC. Again I failed the residuum test. Dear FM, if you are reading this for encouragement and reassurance for yourself, read on and be reassured! I was having a really difficult time with the completel empty your bladder question. Desperately wanted to do it all by peeing naturally until a kind and determined urologist pesuaded me to try ISC. That's Intermittent Self Catheterisation. The very thought of having to insert a tube, (which does look rather long the first time you see one), into oneself is, understandably off-putting. However, hashag-positive-side, it does enable the radiology-radiography team to do their very precise measurments accurately. That in turn enables the treatment to go ahead.

October
My sister died (well into her nineties, so very much more celebrated in the life than mourned in death). For strict accuracy, my half-sister; or for family solidarity, my sister. Anyway, this time a family funeral when I could honestly answer the …and how are you question.

November 15th: I am tattooed. No, dear reader, no I love Joan Forever surrounded by dragons, roses, crucifixes or whatever. Just three tiny dots, neatly artworked by a radiographer to line up with the laser beams that guide the X-ray machine to be used for my radiotherapy. They take this calibration image, then at each treatment the first step is to line up that day's image with this first one so that exactly the right spot on the prostate gets hit. This is the critical measurement that I mentioned earlier.

November 27th – December 24th: Radiotherapy. There is nothing inherently painful or unpleasant about the treatment itself. In fact the regular same-time-every-weekday routine is actuall quite pleasant and calming. Also there's the cameraderie of seeing more or less the same fellow-patients every day, exchanging how do you feel stories; wishing them well – and happy Christmas – when their treatment finished before one's own. What I didn't quite notice at the time was the tiring, debilitating effect of the radiotherapy, which only really kicks in a few days later. My last radiotherapy session was Christmas Eve. By then the delayed feeling of physical weakness was beginning to kick in.

I'll wind up this blog-set on my personal health with a note about COVID-19. February 6th saw the Young Voices concert. Some eight thousand children in their school choirs gather in the O2 Arena with an orchestra and conductor to sing to an audience of their loving families. It is a movingly beautiful show; I was there for my granddaughter together with other family members. Getting there meant a train from Cambridge to London King's Cross, whence another train to Greenwich. At the end, the Arena empties and the order of 20,000 people all want a ride home. Nobody in the first week of February 2020 gave a thought to whose hand touched that rail before mine? a week or so later I felt so ill that for two days I couldn't get out of bed. There was the blinding headache followed by inability to draw breath. COVID-19 had not hit the news yet, but a bit later [consults calendar] February 25th I had a doctor's appointment on a totally unrelated matter. I said "I couldn't have come to see you a week ago", and described the symptoms. "Oh yes", she replied, "that's a virus, a lot of people have had it". Only weeks later did I analyse the events and reason that I very likely had COVID-19. Now that I know that patients who recover after mild symptoms suffer in the long term days of weakness and debility, I feel totally convinced that COVID-19 was what it was. Whatever the full facts, I am leaving nothing to chance because nobody yet knows about immunity.

My overriding thought now is simply sheer gratitude to be still alive. I think what if I had not felt the sense of urgency that very day to make the first GP appointment and say "I have problems getting up to pee in the night, I think the old prostate might need looking at". I think about when the urologist said "Your urinary obstruction could have caused sudden total kidney failure at any moment". I think about the fact that the COVID-19 crisis hit within a few weeks of my treatment finishing; after which all hospital schedules were disrupted. I think that, had events turned out slightly differently, I would be dead by now; and I am profoundly grateful for each day of life. It's time to blog about something else.

Thursday, 1 August 2019

Prostate Cancer Notes Chapter 2

One of the aspects of being a patient is the sharp contrast between periods of busy-ness and not. There are times when you're being inundated with appointments, correspondence, and medications; there are times when you seem to be just waiting for the next event. Now it's one of those intermediate days. I've had the first bone scan: the one where they inject you with the radioactive element technetium, which for a couple of hours frows around your blood looking for bone tissue, then take an image of it. The half-life of technetium is about six hours and your kidneys are very keen to get rid of it, so after a few days the residuum is vanishingly small. I've also had the second bone scan ('DEXA') where they take an X-ray image of the pelvis and femur to estimate bone density. All that is to ensure one is fit to receive the radiotherapy in due course. (What to do if the answer is no, I am not quite sure: "Were taking an X-ray to see if you're fit to be treated with X-rays".)

Last week I had a scary moment. Worried about the pee smelling a bit like month-old forgotten cabbage in the fridge, I called [first port of call] MacMillan nurse. She recommended getting a sample checked at the GP surgery. That done, I was prescribed antibiotics. Within a couple of hours of taking the first tablet I appeared to be peeing blood. Mustn't get despondent, it's not actually much blood, I was told; tablets will soon clear it up. They did. Another couple of hours and problem had disappeared. Earlier this week I should have had TURP surgery (of which more later). Arrived at hospital, urine sample taken, got gowned up, had the surgeon's cautionary talk for consent form. Minutes passed. Then surgeon re-appeared to say that today's events are postponed. I have an infection courtesy of the Proteus Mirabilis bacterium. (The only bacterium to have a Roman emperor named after it.) [Long-story-short]– Surgery postponed by only four days while more antibiotics are deployed. These things happen, dear FM, do not let them make you despondent!

Another variable is how upbeat or downbeat the various doctors are. Some, like the surgeon giving the pre-op talk, need to talk about the worst case scenario. Others are in the middle: there was the specialist confirming my diagnosis and presenting options. "The mortality rate in ten years is just about the same for either choice…". Finally there are the upbeat ones. The specialist who saw me last week was very upbeat indeed: (let's just call him Doctor Chirpy); he had a happy attitude and was very encouraging, promising that "life like a youg stallion would soon be restored". I honestly think that the same technique should be applied to doctors' prognoses as we were taught to apply to observations in school science experiments. That is, discard the very top and bottom ones and take an average of all the others.

As I write this I'm due to go in for the rescheduled TURP surgery tomorrow. Yes of course I'm worried; but I refuse to be despondent. As I told Dr Chirpy, I dispel any pessimism by thinking about my granddaughter who's just coming up to nine years old. I want to get up and dance at her wedding, whenever in the future that might be.

Thursday, 18 July 2019

Prostate Cancer notes Chapter 1

I'm going for the Open Patient policy. That is, I talk about it, as necessary. I talk if talking is going to help. That's help as in to help me, or to help someone else, be that someone else a family member, a friend, or just my Fellow Man. (Should I have said “Just” there?) Hey! The Fellowship of Man is important; let's not downplay it. Fellow men, I address you all: Dear FM!…. We know what we're made of: slugs and snails and puppy-dogs' tails as the old nursery rhyme goes; so yes – talking about it is sometimes going to involve some messy stuff.
I promise, as far as reasonably possible, to use gentle euphemisms when the details get onto the very messy stuff, the very-very messy, inconvenient and sometimes agonisingly painful stuff. This won't suit every reader nor every sub-topic, so remember, whatever device you're reading this on, it has a [back] [cancel] [get-outa-here] button and I shan't mind if you feel the need to use it.

Once I started telling people about it, most reactions were very helpful and reassuring. “My dad had that and lived another x years” that sort of thing. There was even the friend who said “Everybody's had that; I've got a hormone implant, here [points to chest] – like a chicken.” What varied a lot from one also-patient to another was the story about how they first came to get tested and diagnosed. It seemed that everybody's story was different; so for what it's worth, here's mine.
I was noticing that I woke up in the night a lot wanting to pee, but not a lot was forthcoming. I've woken up for the sake of 200 ml. What's that about? So I went to see my doctor and told him adding “Do you think my prostate needs looking at?” Yes, he said. First we need to do some blood and urine tests. More or less from that instant, it seemed that the combined teams of urology and oncology at the renowned Cambridge hospital of Addenbrookes had been deployed on my behalf. Appointments followed each other with such bewildering speed that sometimes it took a look-up on the Google calendar to remind me what I was there for!
So far, most of my appointments have been diagnostic or consultation rather than treatment, so it's still early days. Meanwhile, dear FM, some good news and bad to share. Good: once you're a cancer patient, you're top priority; you get the next available appointment for any treatment. My first pre-consultation appointment was for an MRI scan. That was a day to remember. The priority queueing system meant I got a can-you-come-in-tomorrow call for 8:30 for a day when I had a family funeral to go to in the afternoon. The MRI scan was fine. You just wear ear defenders and lie down in the mouth of what looks like a huge washing machine for half an hour while it makes loud rhythmic noises. I think I fell asleep. The hardest part of the day was circulating around family members all asking “How are you?” and having to say fine because nothing was known yet.
Four days later I had my first urology consultation. Urologist announced that the MRI scan had showed something important, and I needed an ultrasound scan on the bladder –like immediately. Turns out my prostate was so enlarged that it was restricting urine flow so much that I had a serious peeing deficit. “You're not going home tonight,” he said, “We need to fix you up with a catheter so all this can drain off.” “But at least it's probably not cancer; we can fix that with simple surgery in a few weeks.” They reckon that the catheter drained off 1.5 litres that was causing back-up pressure that could have had me collapse with catastrophic kidney failure at any moment. I reckon it was nearer three litres, based on my body weight before and after. (Bad news, dear FM): sometimes even the top experts miss something. A few days of thinking all was well ended when closer study of the MRI showed some lesions; and soon it was time for a biopsy.
The biopsy: well, yes. Now I'm an East Anglian and we just love the understatement. Folk from that little bum-shaped area of eastern England believe that if you really want to make your point in a discussion, the quietly spoken understatement beats any amount of exaggerated shouting. Bearing that in mind, the patient info leaflet on prostate biopsies, in particular the line that reads “You may experience some discomfort” was probaby written by the extremist jihadi wing of the understatement mafia. No FM, you will not “experience some discomfort”. This procedure knocks any mediæval torture you may have come across in Horrible Histories into a cocked hat. I endured it by reminding myself that (at this stage anyway) it was probably preferable to a grisly death; by thinking of all that moral high ground I had scored by signing the bit on the consent form that says yes you can take “a few extra samples” for research; but mostly by grabbing a mouthful of the pillow I was on and biting as hard as I could. “You may need to sit and rest for a few minutes afterwards” says the leaflet. I didn't. I needed to lie on a recovery bed for an hourand a half sipping water and nibbling biscuits until I was fit for anything.
A few more days of waiting brought the results. Cancer confirmed; treatment described (hormone regulators to befollowed by radiotherapy after a few months); a MacMillan nurse and a Navigtor allocated. (That's an advisor, who is a great help.) Oh yes, and a huge pile of printed paper (leaflets, letters, books) to take home and read.
So that's the beginning of the journey. The battle. And the battle against cancer is about normal life carrying on despite it.

Wednesday, 5 July 2017

The Brexit Vote One Year On

Everyone else seems to have had their turn at saying something about the Brexit vote one year on, so this is my offering.
Looking back, and we need to look back to when we joined what was then called The Common Market in 1972 at least, if not earlier, it appears to me that there has been misunderstanding and misleading messages all along.
Probably enough has already been said and written to the effect of Is this really happening?  How can a country do such a destructive thing to itself?  I have been over it in my head many times in the hope that some answer will emerge.  I have tried to do this without making it a blaming exercise, great though the temptation be, because I regard the peaceful integration of Europe to be the most difficult excercise (so far, anyway) in human history.  Never mind sending a rocket to the moon and back with human passengers; that's pure engineering.  Get the maths right and follow up the calculations with an accurate mechanical job, and it will work.  The machine will perform to spec; job done.  Attempts to unite Europe by force have been shown not to work when tried (Julius Caesar, Napoleon, Hitler…) and yet, just as we were starting to actually get somewhere by mutual consent, some {person/group} [insert blame-object here] — goes and clobbers the precious project towards destruction.  Why?
I'm not old enough to remember the post-World-War-II clean-up that gave us Churchill's We must build a United States of Europe…and people will proudly say “I am a European” speech and the European Coal and Steel Treaty between France and Germany, but that's my starting point.  Opinions are divided as to whether Churchill implied that the UK was part of his vision or not. Methinks probably not; otherwise he would have added …and it is Britain's destiny to be a leading light in it.
I am, however, old enough to remember the tail end of the 1960's, when six countries: France, Germany, Italy, Belgium, the Netherlands, and Luxembourg were the only EEC members, UK was knocking at the door and Charles de Gaulle was saying Non!
I remember the Non!-s continuing for what seemed like forever at the time, but was actually only just into the nineteen-seventies. Britain was then called “The sick man of Europe”, and for good reason. We had the three-day week as then Prime Minister Edward Heath called the time when the economy was in such bad shape that – yes, really – we couldn't afford to run factories full time.  Do we need to go through with Brexit until our country is in that bad a state again before we see sense?  Because there was not enough electricity being generated, we had a rota by local area of scheduled three hour power cuts.  I remember, in the weeks before my first son was born and my wife wanting a home birth, soldering up a circuit with a car battery and a headlamp bulb lest she were to go into labour during one of the dark hours. Do we, I say again, need to go through with Brexit until our country is in that bad a state again before we see sense?
Between then and now, we've seen the EU be so successful at promoting peace, prosperity and mutual help through just about every aspect of life that others have said “I want to be part of that” and joined.  That's not only We've been Western all along countries; not only former Iron Curtain countries; but also states that were once part of the Soviet Union itself.  I still have my old school atlas labelling, for example the Latvian SSR.  Within my lifetime, we were spending £shed-loads on maintaining spy networks and missile targeting on them.  Thanks to the EU we don't need to any more.  I don't recall any accounting figures about that written on a bus anywhere, partly because the exact figures are a military secret, but mainly, it seems, because all that doesn't suit the mindset of the Brexiteers.  There are evidently fellow-countrymen of mine, going about their lives, breathing the same air as me, who actually think that having some of them living around us as neighbours (they come over here, harvesting our fruit & veg, staffing our hospitals, conducting our orchestras…) — somehow that's such a bad thing, it's worth ruining the nation's economy to stop it. I can't say I'm lost for words because, well you can see, but it takes some head-scratching to get to why 52% of those who voted a year ago voted Leave.  So why are we here?
 
My personal feeling [number 1] is that we have not shouted our praises loudly enough.  I really think that all the people involved in the actual business of the EU have failed to sell the whole idea to the UK public.  They have failed to do so because they have been so close to it themselves, so obvious are the benefits of EU membership, that they didn't think there was any point in bothering.

There's been big stuff such as incorporating all those former communist lands (no wonder Russia helped the Leave campaign).  There's been medium-sized things such as regenerating Liverpool City Centre and cleaning up beaches; and of course the small things that you need to look for the little EU flags on the tourist information boards for.  All those useful benefits must have seemed so obvious that not enough people shouted them from the proverbial rooftops. We honestly never imagined that the steady drip-nonsense that started with Bananas have to be straight back in the 1970's was worth bothering about because it was all … well, nonsense.  I don't know whose responsibility it was/should-have-been to make a self-praising public relations exercise, and I don't want to, because we're not into blame-culture politics in this blog. Anyway, what could have been done?  Films of happy children dancing round the flag to rousing music are not our style; we know we are joyful Europeans and leave such images with the soviets and Jehovah's Witnesses where they belong.

My personal feeling [number 2] is that we have failed in our use of language. By that I don't mean we haven't been talking in French often enough. What I mean is that we, led and prompted by the anti-EU brigade no doubt, have been talking as if Europe is somewhere else rather than something that's part of what we are: “We're going to Europe for holidays this year…”; that sort of thing.  It's very slight and very subtle, but that's the point.  It works by soft gentle pressure applied for a long time; like a child's dental brace that works when the spring presses gently on the tooth to move it.  If it presses too hard the tooth resists movement.  If a number of us had gone around saying “We're going to The Mainland for holidays this year” the reaction would depend on whether or not the hearer was familiar with the Shetland Island of that name.  A company which I worked for in the 80's sent a form round asking “Would you like to work in Europe?” [various questions and tick-boxes].  I answered mine by adding a box saying I am already working in Europe.

That, then, is why we have fallen off the edge of Churchill's United States of Europe vision.  Even with the ever closer union idea, it didn't look as close as the American states are to each other, (as if that was meant to be off-putting).  An interesting point to ponder is that, when the USA was a new idea still on its drawing board, a lot of discussion and argument took place on the subject of which aspects of life should best be administered at Federal level, and which by each individual State. The relics of this discussion can still be seen on a map, where a Stateline follows an unexpected path because it was worth insisting that you had a port on the sea or a major river, just in case this new-fangled United States idea fails and we need to be an independent country.  The corresponding questions for Europe have not had such public airing.  That's a pity, it could have saved an awful lot of grief.

Sunday, 24 April 2016

Boris Rumbled

Boris Johnson is not stupid. The lovable rogue image is there for a purpose: to distract you from the Machiavellian pursuit of power. So when he makes a flawed statement, you know something is up.

To call President Obama hypocritical for advising the UK to share our sovereignty in Europe “in a way that the USA would never do” is worse than flawed: it's deliberately meant to mislead. Let's have a look at what he has done and how exactly.  He wants to cry “Unfair! My debating opponent here is recommending a course of action for me that he would not accept for himself.”  On the surface it looks as if he has a valid point, so what has he done? The clue is in the carefully crafted balanced sentence, made easy to use by the fact that he's speaking of two countries called “The United [something]”. Strip away the detail of meaning and listen to the skeleton: “The United Kingdom [blah] <pivot> [blah] The United States”.

That's the trick, the magician's sleight of hand; and it is meant to distract you from the flaw. It implies that the two countries, UK and USA, are equivalent and comparable in terms of the topic.  Of course he knows all that (his parents paid his fees for Eton after all). The point he's hiding is that the United States of America already is a union of States, each making its own laws, with agreed borders between them, all with their individuality of resources (agriculture, mineral wealth, diversity of ethnicity and skills of the human population) and pooling their sovereignty together so that the power and influence of the whole is maximised.  Many have an economy the size of entire countries quite high in the GDP league table. It's probably fair to say that any could flourish alone if it ever had to. (No I can't think why any ever might either.) The USA is more like the EU as a whole, but it would be unwise to stretch the analogy too far.

A long time ago, when the USA was a new idea being built into reality (the last quarter of the eighteenth century to put a handle on it), there was considerable debate and discussion about which powers and authorities of public life should be administered by each State, and which should be done at a federal level. So intense were some of these discussions that some states had to plan for the possibility of this new fangled federation or confederation idea falling apart. They might have to be independent separate countries, in which case they would need a port on the coast or a major river. It explains why some state line boundaries steer around natural geographical features the way they do.

Of course the Europe of today is very unlike the North America of around three hundred years ago. However, on the human nature doesn't change principle, the questions we should be asking are on the lines of “How best can we make our EU structures functionally democratically accountable?”, “Which aspects of public administration are better carried out by the National Member State and which by Brussels?”; not “This is undemocratic so shall we break it up in the hope we can try to start again?”. I have more time for the learned academics who believe in that viewpoint than the shallow self-interest of opportunist politicians.

Because Boris Johnson is not stupid. He could put his mind to the above questions if he so wished.  That he chooses not to means he's putting the country's safety and prosperity behind his own power lust programme.

Sunday, 3 January 2016

They shall beat their missiles into squeegees

A couple of days before Christmas…

We arrived at the big Sainsbury's in Norwich, at the Longwater shopping centre, to find the car park busy with a car washing team. The car certainly needed a wash and there was a half hour or so for cleaning while we shopped, so we asked the price: five pounds for a basic hose-down, or ten for a full wash and polish.

“OK– we'll have the £10 wash and polish please.”  (These were clearly people whose first language was not English.)  I reasoned that all was sure to be well because Sainsbury's would soon order them off site if they did anything amiss. 

We returned to an immaculately cleaned and waxed car.  Giving him his ten pounds I asked the guy where he was from.  “Bulgaria” he replied (only of course he pronounced it България).  “Welcome to England!” I said, “and a happy Christmas”, adding a two pound tip with a smile and a handshake.

So what's the big deal here?  It's this: a small fraction of a human lifetime ago, Bulgaria was an Iron Curtain country.  We were spending– I don't know exactly how much, I'm not privy to military secrets, – shed-loads of money keeping missiles aimed at the Warsaw Pact bloc; plus maintaining all the espionage that went with it.

Thanks to the existence of the EU and Britain's part in it, they and other former Warsaw Pact countries are our friends and trading partners.

Thanks to the EU, when the collapse of communism occurred, those countries had a ready-made grouping of democratic nations to come and join, ours, rather than form some other alliance of goodness-knows-what political direction.

That's a great achievement, and all for the price of a few squeegees (minus the price of a few missiles).