Radio Days (7): Breakdown

Don’t worry it’s the machine not me. Mrs Preen and I walk into St Thom’s at 8.30 sharp for my Treatment Review and it’s clear something is up. Apparently, when the first radiographer arrived at 7.30 to crank up the Tomotherapy do-dat, the machine was having no part of it and refused to be cranked. More of this in a moment.

My Treatment Review is with Maggie whose beat is normally at Guy’s Cancer Centre, but she is filling in for Jenna who assiduous readers will recall from Radio Days (1).

As mentioned last time, this is not to see if the treatment is working but to check how I’m doing and whether I’m experiencing debilitating side effects. I tell her, I’m fine but do have to get up to go to the loo a couple of times a night and no longer pee with the intensity of Niagara Falls. But hey if this is what it takes to eject the Unwelcome Guest, then call me satisfied. Maggie is content with my progress, so Mrs Preen and I amble back to the waiting room to discover there’s going to be a lot of it, waiting that is.

With the Tomotherapy machine on the blink, we sit expectantly for the engineer to arrive from Guy’s to jack it up and give the thing a new set of points and plugs. News starts to filter through: The engineer is on his way (hurray!), but he’s stuck in traffic (Nooo!) and then I see a bloke who might be the engineer, though to be fair he looks more like an electrician. Are you the engineer? I ask, no I’m an electrician he says and shows me his mulitmeter.

I turn to Orla, a chatty Irish colleen and ace radiographer, who explains the RT machine detests being powered down completely, but a mains outage has done just that. The machine is furious and will not tolerate being treated in this cavalier manner. Questions circulate: Has the electrician got his little pack of fuse wire with him? Has anyone used fuse wire since the 1970s? So many questions but still no engineer.

We hear a faint rumbling noise: Power is restored! But the machine is still in a strop. Bits of equipment are trundled by and then suddenly a man with a laptop computer appears. It’s the engineer, he is amongst us. Tenderly, he brings the machine’s system back up, it is placated and consents to start lasering the waiting patients, who have been waiting patiently. Finally it’s my turn, I’m irradiated fit to bust and I’m on my way out at just after one o’clock. This is the first road block in an otherwise seamless treatment schedule. And now I get the weekend off and maybe a couple of glasses of wine to boot. Life is sweet.


 

Radio Days (6): Radio Regime

The picture shows the writer about to be posted into the doughnut of doom for his daily dose of Tomotherapy at St Thom’s in London.

I thought a blog describing the process I’m go through every day during my radiotherapy treatment might be of interest to three different audiences:

  1. Those who are about to undergo it and don’t know what to expect
  2. Me, for when I’ve forgotten all about it six months down the track
  3. The idly curious and medical procedure fanatics

I attend the hospital about an hour ahead of my appointment and pop my list of appointments into a plastic holder just outside the treatment room where they are retrieved by one of the team. With my bowels flushed either naturally or chemically, I sit waiting until a radiographer tells me to ‘start drinking’.

Hopping nimbly to the water fountain I fill up a jug with the requisite 350ml and drink thirstily. There is now a gap of about 45 minutes while the water makes its inexorable journey to my bladder swelling the prostate into a target that can’t be missed.

Times up and I’m told to get changed into the fetching gown you can see in the picture. I sit outside the room where the RT machine lurks making small talk with the team until the previous patient is done and dusted.

The change-over is generally quick and I go in. The bed is adjusted to my height and I lie down on a small blue mat which they use to hoick me into position. Every day, at this point I’m asked for my date of birth and the first line of my address. I’m considering having this tattooed on my chest.

With Jim positioned correctly, a button is hit and I glide into the machine’s embrace. First, they scan my prostate to check for empty bowels and full bladder. There is a thunk of compressed air, nothing to do with me, and the scanning process gets under way. Once complete the table slides out and I wait while (I assume) they check they are happy for the treatment to go ahead. If all is well I slide back into the doughnut, there is a rattling sound and their ray guns let loose on my unsuspecting prostate. THIS DOES NOT HURT.

During treatment, there is a constant high frequency rushing sound combined with a rattle that I’ve described before as a wheelie suitcase being dragged across cobbles. I like to imagine it’s me going on holiday.

Treatment complete, the noise stops, and I glide out and jump off the table. Taken together, the scan and treatment take just over ten minutes.

I’m given back my appointments sheet, occasionally times change, after that I wave goodbye to my trusty band of radio-ladies (all female team today) and make my way to the Boris Bike stand and cycle away, ready for another day.

Tomorrow I have a Treatment Review which will also see Mrs Preen in attendance. This is not to see whether the treatment is working but rather to discuss any side-effects I might be facing. None so far, so it might be a short conversation.


Radio Days (5): Motion

Apologies, but once again this blog is heading straight to the toilet. In fact thinking about it, it’s probably best read with the Benny Hill theme tune playing in the background. Not familiar with Benny Hill or his theme? Then click here.

If you’ve read the previous story, Radio Days (4), then you’ll know that when placed into the radiotherapy doughnut, one’s bowels must be empty and one’s bladder must be tightly packed with 350ml of water. I gather the amount of water varies from patient to patient.

Rafiq, my go-to radiographer, told me that to help this process I should self-administer an enema at home prior to visiting the hospital. I’ve done this before during my treatment and they always seemed to take forever to work. So I decided to, for want of a better phrase, shove it where the sun don’t shine, and then bicycle to the hospital, which is only 15 minutes away.

I’m about 10 minutes into the ride when it becomes immediately apparent, that this enema is one of the quick acting kind, and I need to go to the bathroom now, right now, or preferably sooner. I’m Desperate Dan.

Being past the halfway mark it’s too late to turn back, so the only option is to ride like the clappers to St Thomas’. To pedestrians and drivers my Boris Bike becomes a blur, I’m in motion. I overtake a number 77 bus and veer in front of a taxi and get screamed for my trouble. Desperate times call for desperate measures. Plunging the bike into its stand, with my pants still unsoiled, I charge headlong into a hospital toilet and make it in the nick of time. You can stop playing the Benny Hill theme tune now.

Catching my breath in the waiting room prior to my treatment, I chatted with fellow patients who have Unwelcome Guests of their own. Both the presence of cancer and its treatment affects people in many ways. One fellow sufferer was clearly on edge and nervous, blurting out all his feelings to me, a complete stranger. Suddenly realising this might be inappropriate, he apologised. Of course I’m only too happy to chat and said so.

Like me, he’s on hormone therapy, though his course is a great deal shorter than mine. Inevitably we talked side-effects and he claims it’s impaired his thinking as he constantly forgets things. This is a side-effect I wasn’t aware of, and I’m pretty sure my brain is no more scrambled that it was a year ago when I started out on the hormone rollercoaster.

We all have to drink between two and three litres of water a day to help maintain the healthy tissue that might suffer a radiotherapy blast. This causes some complaining, with one older gentleman saying that drinking so much water is making him feel ill. I’m no doctor but I’m guessing the combo of cancer, hormone and radio therapy is more likely to make you feel rubbish than guzzling a drop of H2O. He did moan a lot, perhaps his wife is waterboarding him.

Treatment three complete and as I’m leaving Rafiq and Hodma tell me I won’t be seeing them again as Hodma is having time off and Rafiq is moving back to Guy’s Cancer Centre. Rafiq is a football fanatic, supports Liverpool, but is a steward at Stamford Bridge where he keeps Chelsea fans and their visitors apart. He’s a bit worried about their next fixture, the Cardiff game. I’ll miss both of them.

So far, no apparent side-effects for me from the radiotherapy, but watch this space.


 

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.