Radio Days (4): First Blast

After having your breakfast, in my case coffee along with muesli topped with blueberries and yoghurt, what’s the question you’d least like to be asked? Well I suppose there are many possibilities but ‘Do you need an enema?’ has to be right up there. But that’s Rafiq for you, a no-nonsense radiographer at St Thomas’ Hospital, who doesn’t mince his words. He requires a Preen with no excrement in his bowels and that’s what he’s going to get.

It’s 830am and I’m at St Thomas’ Hospital, accompanied by Mrs Preen, and ready for my first blast of radiotherapy. For the treatment to be effective an empty bowel and a full bladder is required as this gets the prostate gland into the right position and apparently helps reduce side-effects.

Cancer doesn’t lend itself to whimsy, but I’ve been thinking about the Unwelcome Guest who’s been getting a good kicking from the hormone therapy treatment I’ve been enduring for almost a year. Now the little bastard is about to get an agricultural blast of the finest NHS Tomotherapy. ‘What fresh hell is this?’ I imagine the Guest thinking, hopefully giving him all the encouragement he needs to check out.

But enough of such whimsicality this is a serious day. You can sort of tell it’s serious because there is free chocolate everywhere. The cash strapped NHS doesn’t generally hand out treats to its patients, so I assume the deluge of Cadbury’s comes from some kindly charity.

Breaking news: no enema is required so I’m taken to sit with a bunch of old boys who are also waiting to be treated. I’m given 350ml’s of water to drink to swell my prostate to an appropriate size.

Forty-five minutes later Rafiq appears and leads me through to a changing room where I don a hospital gown. Helen and Hanna, also part of the radiography team, then show me into the treatment room where I’m confronted by the Doughnut of Doom or the Tomotherapy device as it’s more commonly known.

If you’ve read Radio Days (2) you will know I underwent a trial run, which involved me getting inked with three tattoos to enable the team to line me up correctly on the table. This process involves lasers focussing on the tattoo crosses and ensures the radio-beams are fired at the Guest and don’t damage too much healthy tissue.

Preen placement is achieved quickly with Helen telling me that first they scan my prostate to check my bowels are sufficiently void and my bladder sufficiently bloated and then, if all is well, the treatment begins.

So I’m lying there in the heart of the doughnut, I guess I’m the jam, keeping as still as I can with my hands folded across my chest. Thankfully bowels and bladder are in peak condition, so the treatment goes ahead with the whole process taking no more than 12 minutes.

The room is quite cold, presumably to keep both the machine and patient cool and unlike the MRI scanner, this one is mercifully quiet. There is a kind of high frequency rushing sound combined with a gentle knocking that reminded me of a wheelie suitcase being dragged across an uneven pavement.

The treatment causes no pain, but some side-effects may follow, with tiredness being the most likely. I’m out the door by 9.45.

This was ray-day one and I’m now to undergo a further 38 of these treatments every weekday until 7th November. I’m quite interested to see how I progress and whether side-effects do manifest themselves. You’ll be hearing from me.


 

Radio Days (3): It all kicks off tomorrow

My course of radiotherapy starts tomorrow, and I can’t deny I’m approaching it with a degree of trepidation. My birthday falls right at the beginning of September and kind friends and family have made the celebrations to mark my 64th trip around the sun last a full week, but these must now draw to a close.

My treatment takes place at St Thomas’ Hospital which was unexpected as all my previous consultations, scans and tests have been at Guy’s.

Coincidentally, we have a family friend who is a senior medic at St Thomas’ and she has given me two excellent pieces of advice which I’ll do my best to follow.

First up, I am being treated by the NHS and as marvellous as it is, there will inevitably be delays and days when I’m kept waiting around, perhaps for hours. Her advice: Accept this as an inevitability, take a book and don’t stress. I’m continuing working while being treated but making meetings on time or making meetings at all could be tricky.

It’s likely I will get side-effects from the treatment, some of which may be unpleasant, but all being well these will be temporary. Her advice: Acknowledge this and take it in your stride; it won’t last forever.

Years ago, I was a journalist and inevitably got into some scrapes; postings in Sarajevo, Mogadishu and DR Congo spring to mind. I was never remotely brave but if I knew we were going on a potentially dangerous assignment I always wanted to get on with it so as to leave it behind as soon as possible. Rather what I’m feeling right now; let’s do this thing.


A blog well worth looking at is Dan’s Journey Through Prostate Cancer. He was diagnosed in November 2010 and has kept a very informative an enquiring blog ever since. His writing is now a fantastic resource which contains a huge amount of technical and informative information.

Taken almost at random here he is on relationships:

When you tell someone that you have cancer, be ready for the relationship to change, most often in a direction that you didn’t anticipate. Some of those closest to me couldn’t handle the news and were the ones I could least depend on for emotional support, while some who were mere acquaintances prior to the diagnosis became my rocks.

I learned that I had to be the strong one in the relationship, even when I didn’t necessarily want to be. I also learned that I had to set the tone on how and when to talk about–shhhh–cancer. My approach was to talk about it openly, honestly, and with humor. I had to make fun of this somehow. 


 

Radio Days (2): Prostate mapping and other larks

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 12th September and grinds to a halt on 7th November. I will be reporting on my progress, so join me if you feel inclined, as Jim’s cancer capers continue.


 

Radio Days (1)

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.


 

Good news

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.


 

Celebrity endorsement

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.


 

Going private

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.