The Unwelcome Guest

An eight-week course of radiotherapy, to treat my prostate cancer, starts soon. So, in preparation I spent most of yesterday at Guy’s Cancer Centre being scanned, measured and probed by a series of large, impressive machines. The one you see above is a General Electric CT scanner. The machinery was operated by a bunch of brisk, caring NHS staff.

Before the radiotherapy starts the docs need to have my prostate mapped so they know where to shoot their rays. They aim to target just my prostate, currently home to the Unwelcome Guest, and leave the healthy tissue alone. Having said that if all goes well, when they hit the cancer it should die, whereas the healthy tissue should regenerate.

The CT scanner does the mapping, but it needs help. That involves my bowels being empty and my bladder being full of water – 350ml to be exact. A cannula was jabbed into my arm, so they could fire dye into my blood stream which apparently makes the prostate and attendant lymph nodes glow in the dark. The technicians also have to fix my position, so it can be replicated while I’m under the gadget that dishes out the radio beams. To help them achieve this I’m now the proud owner of three tattoo crosses which will help them line me up. This seems either charmingly low-tech or alarmingly unscientific depending on your view of such things.

So, I’m lying there, the machinery is whizzing, and all seems to be going well until suddenly it grinds to a halt. The machine, a stickler for such things, has deemed that my bowels are not sufficiently evacuated so I’m sent to the loo with a flea in my ear and an enema to stuff up my arse. What women say about childbirth is equally true here, you check your dignity at the door.

While nature takes its course, I read my book and drink yet another 350ml of water. This all takes around an hour, but this time my bowels are deemed to be in peak condition and the scan gets underway and lasts just a few minutes. I’m not shown the results, but I’m reliably informed the docs now have access to an ordinance survey map of my prostate.

Next up is an MRI scan which is part of a trial I’ve agreed to and is not a feature of current radiotherapy treatment. The trial is an attempt to harness the imaging of both the CT and MRI scans to improve the accuracy of the ray guns which target the luckless prostate. Apparently, a lot of maths is involved, so I think I’ll leave that to them.

MRI scanners and I have form and let me say right away I’m not a fan. My first MRI took place in the 90s to determine whether I had a prolapsed disc in my back – I did. Then around nine months ago I had another scan to check the size and general ugliness of the Unwelcome Guest. It was 10mm’s ugly.

This latest instalment was no better. You are stuck in a tube and as mentioned in a previous blog, the sound the machine makes is the equivalent of living next door to a heavy metal band. Every tune is in a relentless, thunderous 4/4 time signature. No waltz time for this baby. Despite wearing headphones to muffle the racket, after 45 minutes I’ve definitely had my fill.

The staff are grateful for my participation and I’m grateful to be gone. As I leave I’m handed my radiotherapy schedule. The fun starts at 8.30 on 12^th September and grinds to a halt on 7^th November. I will be reporting on my progress, so join me if you feel inclined, as Jim’s cancer capers continue.

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Probably like you, I’ve been sizzling in sun rays this summer, but very soon, as part of my prostate cancer treatment, I’ll be bathing in radio waves. I’ve known for some time that radiotherapy, the pointy end of my treatment, would start in September. It was established early on, that my prostate was not ripe for removal, so I’ve been on hormone therapy to shrink the Unwelcome Guest and that treatment, despite some irritating side-effects, seems to be working well. Now it’s nearly time to enjoy seven weeks as a guest on Radio Therapy.

You, dear reader, have almost certainly never had radiotherapy and I hope you never do, but this is the kind of cancer stuff that rarely gets talked about except among family and friends. So, I thought some of you might be interested to know what goes on. If you’d rather hack your arm off with a blunt penknife, I totally get it. Go find some more pleasant, diverting activity: take the dog for a walk, play guitar, read a book – I would probably do the same.

Anyone still here? OK well, it all starts, as does just about everything these days, with a PowerPoint presentation. To which you might say, Christ haven’t these poor bastards suffered enough? At 10am on a bright, clear, sunny day, the cancer contingent all trooped into a room in the urology department at Guy’s Hospital to find out our fate. Most were surprisingly chipper, though some looked as though life had taken a couple of chunks out of them. We all had a question on our lips: Radiotherapy, what’s that like then?

Jenna, the bright and breezy Urology Advanced Practitioner, had the answers. I’m to have radiotherapy five days a week for seven weeks at the same time and place every day. I get weekends off for good behaviour. The treatment doesn’t hurt and I’m not walking round like some kind of mobile Chernobyl, I’m safe to handle, but there are side effects. More about those in a moment.

I’ve never been a tattoo kind of guy. In my youth it was squaddies, crims and sailors who got inked, not nice middle-class boys like me. All that’s set to change. I’m now getting three tattoos, one on each hip and one just below my navel. These small dots will be used to line me up on the Intensity Modulated Radiotherapy do-dat in the same, correct position each time. Fairly soon, I have a terrible feeling I’m going to start talking about my ‘cancer journey’. If I do, a sharp blow to the head should fix it.

Us prostate people will also be drinking gallons of water over the coming weeks to enlarge our collective bladders (that might be an image you’re going to struggle to forget). This pushes the healthy organs out of the radio beam’s intrusive gaze and makes sure it’s just the prostate that receives both barrels. In fairness that’s not exactly the words Jenna used.

But hey, it’s not all just fun stuff. While the treatment may be pain free it does come with some baggage. It seems that about a month into the treatment I may start to feel dog tired and will have to take to my basket. I may be hopping to the loo twice a night and also my bowels…. whoa, whoa, whoa, actually you know what? You’ve suffered enough, if you want to know more Google it.

After the seven weeks the cancer should be nailed, but cancer is nothing if not a slippery bastard, so I’m then monitored every few months to see if the Guest has checked out or has decided to dash back because it had forgotten something.

Towards the end of the talk a little wizened man at the front who hadn’t said much suddenly piped up: “Can we drink alcohol during the treatment?” It was a sort of cartoon moment, there was total silence and total concentration as the room collectively held its breath. Well Jenna, well, can we?

I’ll keep you posted.

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People are very kind and often ask how I’m doing and the answer is I’m doing fine. I went to see my oncologist yesterday (boy, I hate those seven words) and my progress is good. I’m on a particular form of therapy to shrink the tumour and a blood test that gives an indication as to how that’s going was encouraging. My PSA level came out at 0.8 and all you need to know is that I started out on 5 so I’m well on the way to the highly desirable zero. The joys of radiotherapy will have to wait until September.

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Since I last posted: Stephen Fry has fessed up, George Monbiot, the writer and environmental activist, has outed himself and now Bill Turnbull, the former BBC Breakfast host is in on the act. Prostate cancer gets the full celebrity endorsement as all the poor bastards have it; proving that PC is nothing if not democratic.

When I meet people who I may not have seen for a while but who know about my condition, I gauge four different responses.

1. I’d like to make it implicitly clear, without mentioning the subject, that this is something I feel very uncomfortable about and I don’t want to talk about it.
2. I kind of want to talk about it or sense I should, but feel uncomfortable raising the subject.
3. I’m concerned about you, so tell me: “How are you getting on?”
4. I’m concerned about you, want to know how you are getting on, want to know what kind of treatment you are receiving, if the side effects are awful and what the prognosis is.

Let me say right away that every response is just fine. If you don’t want to talk about cancer as it gives you the heebie-jeebies I completely understand. It can give pleasant banter a savage blow to the head. Instead, let’s chat about playing guitar in a rock & roll band, when Wenger will finally leave Arsenal, how wonderful Aimee Mann is or the relative acting merits of say Jennifer Lawrence or Amy Adams. Dammit I’ll even talk about Donald Trump if we have too and yes, I have read ‘Fire and Fury.’ If you don’t want to talk about prostate cancer, then neither do I.

As to the second response, I can usually sense when someone is not sure whether cancer is a subject that should be raised in a social situation, so I raise it anyway but make it clear I’m not going to bore on about it. People usually want to know why I first went to the doctor (I had blood in my urine), how I’m feeling (Just fine thanks, I don’t plan on collapsing over the finishing line any time soon) and are you still able to drink? (Yes, and mine’s a large one) People are so dear, I’ve never been bought so many lunches and drinks, so thank you.

My response to those who come right out and ask me how I am is pretty much the same as the above, but with a little more detail. I went to the doctor because I had blood in my urine, but that’s gone away, so thank god I got checked out because if I hadn’t it would now be spreading and the two things we all know about cancer are:

a. We don’t want it.

b. If we’ve got it then let it be small, insignificant and localised.

Health note: (ignore the next couple of paragraphs if you are of a nervous disposition) I then assume the serious face and tell the guys to go get their PSA (Prostate-specific antigen) checked. It’s just a blood test but gives doctors an inkling as to whether you might be in trouble.

My PSA is quite low at 2.61 and a few years ago doctors may have left it at that, which would have been a mistake, but my Gleason Score, which grades the cancer, is quite high at 7. This is me: Gleason score 7 (4 + 3). I’m told most of the cancer cells found in the biopsy are likely to grow at a moderate rate, though some look likely to grow more slowly. It also indicates, as does the MRI scan, that most of the cancer is retained within the prostate, with just a small section attempting to break on through to the other side. I could now go on to tell you about the glories of having a biopsy but as you’ll probably never need one, I’ll leave it there. Put it this way if a prostate biopsy was rated on TripAdvisor, it wouldn’t get many takers.

And so finally to the person (rare in my experience), who wants the full enchilada, the whole story. Frankly, if they want it, they get it. It doesn’t really become me to be coy and reticent when here I am blogging to all-comers about my predicament.

I tell them about my treatment: no prostatectomy, which is the removal of the entire prostate gland, as a tumour is too close to my rectum for safe cutting and hacking. So, I’m on hormone jabs to shrink the tumour until September when the guest will be blasted with radiation in an effort to encourage the little bastard to check out. I could tell you about the side-effects of hormone therapy, but I think, dear reader, you have suffered enough. And frankly they are as nothing compared with the side-effects of being sixty-three.

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Heading out to see a specialist I recalled the phrase: Never go to a doctor whose office plants have died. For the first time I was seeing a private doctor and forsaking the NHS. Would I find a better class of houseplant?

When I mentioned that I’d been diagnosed with prostate cancer, an old friend got in touch to say that he too was in the same unlovely boat. Like myself, he was prescribed hormone therapy, followed by radiotherapy. The hormone jabs didn’t agree with him and he started to investigate other treatments, but by that I don’t mean the snake oil brigade. What he found was a procedure with a snappy acronym, HIFU which stands for High Intensity Focused Ultrasound. It uses high frequency soundwaves to heat and destroy cancer cells.

It is a relatively new treatment so doesn’t have years of statistics to back up its efficacy in the way of the more conventional treatments. But it seems to have dispatched my friend’s cancer, with the huge proviso that it can always come back, so it seemed sensible to pay his doctor, Professor Mark Emberton, a call. He is Professor of Interventional Oncology at UCL and a leading light in new forms of prostate cancer treatment. He does work with the NHS, but appointments are limited, so as I have private health insurance provided by my employer I booked a slot with the eminent Prof.

I had always been told never to go to Harley Street as the docs there are often out of touch with the latest medical trends and live in glorious, slightly backward, isolation. Of course, you get the personal service and don’t have to mix with the hoi polloi.

Arriving at 8am, mine was the first appointment of the day. The usual crash and bash of the NHS was markedly absent as my wife and I were shown in to a wood panelled reception area with overstuffed chairs and copious magazines and newspapers. Two elderly orthodox Jewish gentlemen, dressed in black garb and with fulsome beards, were the only others present. They seemed very distracted and couldn’t sit still, but hey, cancer can do that to you.

A few minutes later, the professor comes into the waiting room looking for me and we are ushered into his large and surprisingly cold consulting room. Prior to the appointment all my NHS tests, including the pictures from my MRI scan, had been forwarded to Emberton and for the princely sum of £250, his minions had taken a look at my insides so as to bring the Prof up to speed.

I have one major tumour of around two centimetres located at the bottom left of my prostate. Apparently, I moved during the MRI scan so the little bastard is a bit blurry, but this does little to hide its inherent ugliness. This is a picture I’ve seen before and when people say a picture paints a thousand words, in this case that would mostly be words that end with off. Sod-off, fuck-off, bugger-off and piss-off come to mind. Can’t get to love this unwelcome guest.

The urbane doctor takes me through my test results and pictures. Prior to this consultation I had told my NHS doctors about this proposed visit, they knew of both Emberton and his treatment, and had said it would not be suitable for me. Prof Emberton did not demur and agreed my current treatment was for the best. A second opinion is valuable but can be problematic if it doesn’t endorse the first opinion. So thankfully, no tricky decisions.

I’m at a bit of a hiatus right now, hormone therapy underway, side-effects not too bad with the prospect of radiotherapy to follow in September. To begin with my cancer diagnosis was constantly front and centre in my mind, now while I can’t say it’s entirely out of my mind it can bloody well take a back seat. I plan to enjoy this Spring and Summer to the full and take the Autumn as it comes.

Oh, and yes of course the office plants were magnificent.

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Back to Guy’s Hospital cancer centre for some more tests. They seem to have an animal acronym fixation here, so today it was both a PET scan and a CAT scan. I thought about asking if I should bring Rusty but I guess they’ve heard that gag before.

For those who have had the fortune never to visit Guy’s cancer centre, and I highly recommend you keep it that way, it is a bright new building with airport style displays often telling you your appointment has been delayed but ultimately which consulting room you should attend. Fortunately, there are no signs for departure gates.

Architects Rogers Stirk Harbour & Partners and specialist healthcare architect Stantec designed the building which as it says on the website is based around a series of ‘villages’. This is when you realise the whole 14-storey block is suffering from AED or Acute Euphemism Disorder as we doctors call it. There is the Chemotherapy Village and the Radiotherapy Village. As my friends will tell you I’m not much for the countryside but I don’t remember the Chemotherapy Village nestling in the foothills of the Cotswolds.

What I do think they should have at the cancer centre is a bar. I quite fancy swapping cancer related anecdotes with my fellow sufferers while getting on the outside of a bottle of Jack Daniels. And given everyone’s condition, smoking shouldn’t just be allowed it should be positively encouraged. ‘Smoke ’em if you got ’em’ should be the watchword at the Radiotherapy Bar. It would really help with the whole Villagey atmosphere they are trying to create.

The persistent patient

I’ve never been seriously ill before, so the experience of being an NHS patient is new to me. I have no doubt the care that I’m getting is second to none, Guy’s is rightly called a centre of excellence, but I’m learning there’s more to being a patient than just turning up on time.

The hospital is large and has many consultants so you don’t form a relationship with any one doctor. I’ve seen a different consultant on every visit, without exception they have been great, but you don’t get the personal touch.

In my experience comms is where they fall down. On several occasions, I’ve received letters inviting me to an appointment, after the consultation has taken place. Not a problem because I’d nailed the appointment on my previous visit. I’ve also had appointments booked that I didn’t need. Your appointments may be in several different locations and you may, for example, need to fast before a blood test. I’m in email contact with a nurse who helps me sort all this out as getting through on the phone is difficult. Keep notes, keep a diary and keep on track.

At other times, I’ve been in waiting rooms with perhaps 50 other patients all waiting to see a doctor. In this situation, I check the name on the badge of the person at the desk, say hello using their name, and If I’ve not been called half an hour after my appointed time I go back to the desk and ask very politely when I will be seen. Now, if English is not your first language, you are of a retiring nature, or perhaps you are old and not up the struggle, it is possible you will get lost in the system.

Screaming and shouting will get you nowhere, but quiet persistence will. Being a patient means looking after and looking out for yourself.

Doctors have a great mordant sense of humour. At one point I was banging on to a consultant about how both my parents had died of heart attacks at quite a young age and how I’d always assumed I’d be having triple heart bypasses and the like and with no history of cancer in my family never thought I’d be a (baby) boomer with a tumour. The doctor thought for a moment and said well Jim just to put your mind at rest you’re still far more likely to die of a heart attack. Thanks doc.

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You may have wondered what happened to this blog and whether I’d disappeared. In short no, I’m still here, but just before Christmas I was diagnosed with prostate cancer, so as you might imagine that rather got in the way of writing humorous essays on London. But more of that in a moment.

Around sixty years ago god was checking the paperwork to see who was out for delivery and luckily it was me. The big man paused and looked at his notes, muttering to himself: “Well it looks pretty sweet for Jim Charles Preen. British, born to middle class parents, gets a decent education, the good things are programmed to rain down upon him. Well, lucky for him but what say we redress the balance occasionally?”

Of course, god was right. Well he would be, wouldn’t he? Extraordinary things have rained down upon me, but that didn’t stop him from having the odd laugh.

Sideburns, beards and moustaches

Growing up in the early seventies was a pretty hairy time, I mean literally. Hair was everywhere, it touched men’s shoulders for the first time in 200 years and sprouted luxuriantly from sideburns, beards and moustaches. Just take a look at that old devil Peter Wyngarde, what that man couldn’t do with a smoking jacket and an industrial set of whiskers.

This all made a deep impression on my teenage version and I’m: “Where do I sign up?” Hair was grown down to my knees, brushed and occasionally washed, that is until I was 28 and like the second in line to the throne it all fell out. Bald as a billiard ball. Score 1, god.

I always loved music and was introduced to jazz by my dad at an early age. He brought home a walnut encrusted gramophone that sat self-importantly in our living room. It came with LPs that displayed its stereo capabilities. My dad and I sat between the two speakers mesmerised as ping pong balls shot from side to side and trains trundled from one speaker to another. Hi-tech sixties heaven.

The New Frontier

Then came the albums or LPs as we called them. The covers were almost as good as the music. The Dave Brubeck Quartet gave us the soundtrack to President Kennedy’s New Frontier with modern art on the album sleeves and modern jazz deep in the grooves.

Oscar Peterson wore his pianos out playing more notes than seemed humanly possible. Chet Baker melancholy and bleak and who I thought when he sang was a woman until I looked at the beatnik cool album covers. I danced to them all and love them to this day. But here’s the rub I’m now quite deaf and struggle to hear those beautiful sounds in the way I once did. Score 2, god.

Now in my sixties; the knees are gone, the hair’s long gone, the hearing’s gone and I live in constant expectation that my cock will drop off. Men of my age are in what some call sniper’s alley. What was that, that went whistling by? A stroke, cardiac arrest, so many interesting possibilities. Up until now they have all missed their target, but not now, now I have an unwelcome guest.

In similar circumstances, when he was diagnosed with cancer, PJ O’Rourke said: “I looked death in the face. All right, I didn’t. I glimpsed him in a crowd.”

I’ve been diagnosed with prostate cancer, it’s treatable, manageable and just possibly curable, but cancer can be a slippery bastard and demands to be taken seriously. In fact, the worst aspect of the diagnosis is that right now it’s hard to think about anything else. I didn’t expect a cancer diagnosis to be so damn compelling but at the same time so boring. Thanks god, score 3.

So, what is a writer supposed to do with this information? Well write about it I suppose.

I’m being treated with brisk efficiency at the Guy’s Cancer Centre at London Bridge. Actually, I favour brisk efficiency as if nurses and doctors show their softer side I’m likely to get teary and embarrassing. But being in the NHS mix is interesting and while there have been many cancer memoires by writers far greater than me, I’m inclined to draw the curtain back a fraction on my experiences. Don’t worry I’ll keep it light. Well that’s my intention, let’s see how it goes.

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