Radio Days (11): My side-effects have side-effects

Most days the dog and I trot round to Kennington Park. It’s particularly beautiful at the moment with the leaves on the London Planes turning to shades of gold and brown. Rusty, being gold-leaf coloured, disappears as if she’s wearing camouflage.

I remember taking this walk just over a year ago, not long after the mutt came from Battersea to share our life. It was a scary time, I’d just been diagnosed with prostate cancer and I had no idea what the future held. I wasn’t even sure I had a future.

Things have changed for the better and I have every reason to believe Bucket and I will be taking the same stroll next year. But I know from interaction with others that the early days, just after diagnosis are tricky. My life felt out of control; slipping from my grip.

I’m currently having two day’s grace from Radiotherapy while the doo-dat is jacked up and serviced. I want it over but can’t deny it’s quite pleasant to get some time off.

I’ve had 26 rides in the doughnut of doom and have a further 13 to complete the course. I asked Aaron, one of the radiographers, how many patients he treats in a day and he told me it’s between thirty and forty. That’s a lot of prostates getting clobbered by just one machine.

Sorry to bang on about the side-effects of radiotherapy yet again, but something needs to be made clear. I was warned that about a month in many people feel overcome with tiredness and fatigue. I’m feeling a little tired myself for the simple reason that I’m now getting up to pee four times a night. I’m wearing out the Axminster on the way to the bathroom. I’d assumed fatigue would be a direct product of the treatment rather than a side-effect of the side-effects. Breaking News: Man feels sleepy because he’s not sleeping very well.

I’m now scanning the internet to find side-effect free medication that’ll stop me talking about sodding side-effects.

Moving right along, I want to introduce you to a new member of the early morning cancer crew, another of us lads (Lads! Who are we kidding?) who sit waiting for our doughnut appointment. I’m calling him Stringbean and I thought to shake things up, I’d tell his story in the style of Damon Runyon.

Such a guy as wears shorts

So it’s round 9 bells and we’re all sitting in the paddock, waiting for one of the radio jockeys to come in saying, quite formal: ‘Please start drinking Mr Preen’ on account of we need to get outside of a jug of water to fill our bladders, so the ray guns are hitting their target. And there are the usual jokes like ‘I’m having a little whiskey with my water today’, which aren’t funny but hey some of us like a little whiskey now we have cancer an’ all.

We are a gabby bunch talking of this and that with someone crying the blues about Radiotherapy, Hormone-therapy Tomotherapy and Brachytherapy until most of us are wondering if there’s some kind of therapy that’ll put a sock in his mouth.

Just then a new guy busts in. So of course we give him the big hello, nice to see you, haven’t seen you before and so on. He’s a tall string bean of a guy, maybe seventy with white hair and not so remarkable except he’s wearing shorts, a t-shirt and trainers. We’re all thinking, who is this wingnut wearing beach clothes in the middle of autumn? Of course, being English we stay shtum and Stringbean sits down and we lapse into silence and wait our turn on the doughnut.

Next day we’re there shooting the breeze when in comes Stringbean once again sporting the shorts, t-shirt and trainers rig. This is too much for me so I’m saying: What’s with this garb? Are you jogging here? No Stringbean says, I’m coming from Bromley and taking a train and a bus. And I say you must be some kind of chump, it’s freezing out there.

What you say is true, he says, but a story goes with it. Well of course we all love a story and are all ears, even those of us who don’t hear so good no more.

Stringbean starts and it sounds like he’s crying the blues along with Mr Therapy. I’m working hard all my life, he says, and sometimes I’m on Easy Street and have plenty of scratch and other times no scratch at all, maybe not even two bobs to rub together. One time a dame gives me the run-out powder and I’m sad as all get out.

And all us greybeards are going: tell me about it, been there done that, because we’re thinking we are great sages about life and very likely had the same ups and downs ourselves. Though of course young people are claiming we know nothing at all and maybe not even that much, which is very fair because that’s how we think about them.

Stringbean continues: A couple of years ago I retire from my job in the government department and by now I have a few bobs to my name, a little pension income every month and life is very sweet. And one day I’m waking up and not running for the 6.15 train when suddenly it hits me: I’m on holiday for the rest of my life! And now I’m such a guy as wears holiday clothes 24/7.

Well this sounds fine to one and all except we live in England where the temperature is lower than a limbo dancer and he’ll be lucky not to get chilblains to go along with his prostate cancer, but of course we keep that to ourselves.


Hormone Therapy: Is there a good side-effect?

I’ve been undergoing hormone therapy for nearly a year and have just had another injection or implant. These last three months and stop hormone testosterone from reaching the prostate cancer cells. Unfortunately cancer relishes and grows on a diet of testosterone.

In previous blogs I’ve talked about the various downsides to this form of therapy, particularly the unpleasant side-effects. In a moment I want to talk about the possibility of an unexpected upside. But first let’s look at the sharp end of this treatment; specifically a bloody great needle.

A little prick

Those of a squeamish nature may want to look away now. The injection is delivered by a spring-loaded needle that shoots a slow release capsule into one’s abdomen. I’m not queasy about jabs but I tend not to look too closely as this medieval instrument of torture.

If the medical practitioner delivering the shot is skilful, it’s a moment of mild pain. If the skill level is one notch down, it does hurt a bit. If the doctor, and I use the term advisedly, has the chops of a butcher then the pain level is not inconsiderable.

My first injection was at Guy’s Cancer Clinic where a supremely skilled nurse popped it in, no problem. The nurse at my GP’s surgery is a little hit and miss and last time there was a fair bit of bruising. This time I was told a nurse was not available and a doctor was going to do the honours. Everyone knows doctors are useless at delivering jabs as they do it so infrequently and it’s a job best left to nurses who do it all the time. So I want to tell you that on this occasion I couldn’t have been more wrong, and the doctor delivered the injection in a professional pain free manner. I want to tell you that, but I can’t. For the first time I actually shouted out in agony. I can’t imagine what the other patients thought was going on.

Prostate cancer is tracked in various ways but the most common and widely used method is a PSA test that measures the total amount of prostate specific antigen (PSA) in your blood. It’s normal for a man to have a small amount of PSA, but a raised PSA level might indicate that further investigation is needed. When I was first diagnosed my PSA level was 5.03, which is relatively low and might not even indicate cancer. However, a physical examination and biopsy showed the Unwelcome Guest had set up shop.

Just a month after having my fist hormone injection my PSA was down to 2.61 and then six months later it was down further still to 0.8. So clearly the therapy is working and there is every expectation that when I have another PSA test in January of next year it will be even lower.

Last Friday Mrs Preen and I attended a radiotherapy treatment review session with Jenna the Urology Advanced Practitioner who we’ve met before. As ever she is excellent and a credit to the NHS. The bad news is she’s leaving to go work with one of the radiotherapy manufacturers, where I’m sure she’ll do a great job, get paid far more, but will be a great loss to our care service.

I have an appointment with my oncologist – still one of my least favourite sentences in the English language – in January. I asked whether, along with the PSA test, I’d have another MRI scan to take a closer look at the Unwelcome Guest, but Jenna said I won’t because there will be nothing to see, the cancer will have gone. I’m fully aware the Guest can make an unwelcome return, but I hadn’t appreciated that once the radiotherapy is complete, the current incumbent will have been booted out.

The docs then monitor my condition using a PSA test every three months until June and then every six months after that. If subsequent tests produce a similar result to that taken in January, then all is well. If the PSA level starts to rise, then that is a cause for concern.

I have another two years of hormone therapy in front of me and sure wouldn’t mind having my sentence reduced. Gabbing with one of the cancer crew in the waiting room, one of my fellow sufferers said some recent research indicated that 18 months hormone therapy might be sufficient. I put this to Jenna, who merely said I should ask the oncologist in January, but this got me thinking.

An unexpected upside?

Regular readers of the blog will know that despite having cancer I feel remarkably spry and chipper; I’m not depressed or downhearted. Some comment on how ‘brave’ I am and wonder how I continue to be so upbeat. Trust me I’m not brave and neither am I putting on a brave face. Most of the time I really do feel happy. If I didn’t I’d say so.

Here’s another thing: Whenever food is served in our house, Mrs Preen and the daughter laugh at me as I’m always the first to say how delicious it tastes. For the absence of doubt, we are both good cooks.

At the back end of last year when this whole cancer farrago kicked off and it was decided that instead of having my prostate removed I should go down the hormone and radiotherapy route the oncologist outlined its pros and cons and talked about the possible side-effects. She then made a throwaway remark, claiming one of her patients had once told her he’d never felt better than while on hormone therapy. At which I remember thinking at the time: yeah right pull the other one. Typical doc just trying to gee me up and make me feel better.

So here’s the inevitable question: Is the reason I’m feeling happy and content and food tastes so good a completely unexpected side-effect of hormone therapy? Am I enjoying some form of chemically induced euphoria which will come crashing down once the therapy finishes?


 

Radio Days (10): Half-time

Tomorrow the seasaw tips and I start on the second half of my radiotherapy treatment. Just 19 fractions to go and then the doughnut and I part company.

Many of my prostate pals have already done their time: Bassie and Chas have gone, and John has one session left. Unfortunately their places are quickly taken as prostate cancer seems all the rage these days.

The many new faces include Sir Alan, a transatlantic sailor and board-level businessman. He’s now in his 80s but sailed to the Caribbean and back when he was 65 and was messing about on his boat in the Solent last weekend.

As you can see from the picture I finally got one of the doughnut jockeys to take a snap of my insides. These are the screens they look at while I’m being nuked.

They take pictures of a series of slices through the abdomen. The white sections on either side are my hip bones and the central section is my prostate and bladder. I think the red circle indicates the prostate and the flattened orange circle is a lymph node. This has to be zapped as the cancer has set up camp there.

Lymph nodes and lymph vessels form a superhighway that allow fluids to be transported around the body. Unfortunately cancer likes to hitch a ride on this highway and uses it to spread, hence the need to take out this particular node.

Personally I don’t think I’ve ever looked lovelier than in the picture below, but the prostate shows clearly in blue. Just above that keen sailors will have spotted three tabs marked Pitch, Roll and Yaw, all rated at zero. So clearly the radio-waves I was surfacing barely ruffled the surface.

Prostate Cancer

If anyone has anything to add and can decode these pictures better than I, then please do so.

Cancer communication

Sometimes people talk about cancer in unhelpful ways. In newspapers a celebrity is said to be ‘battling cancer’ and if they die they’ll have ‘lost the fight’.

At times it’s suggested cancer can be beaten if only people try hard enough. I know why newspapers do this because it plays to the emotions, but it in no way reflects what it’s like to be a cancer sufferer. When people succumb to the disease, suggesting they’ve lost a fight or didn’t try hard enough to overcome it is odious.

My approach is to treat cancer with the contempt it deserves. I cycle to my hospital appointments and go to the gym twice a week ostensibly to keep healthy, but actually it’s my way of saying you’re not going to stop me living my life buster. Or else I just laugh at it and hope it feels ashamed of itself.

Of course I’m aware it may be the Unwelcome Guest who has the last laugh, but when a person dies, the cancer goes too. Deeply unsatisfactory for the host and presumably the Guest.

Radio Days (9): The early shift

Leaving the hospital on Friday I cycled through The Cut at Waterloo and spotted an art deco antique shop called Radio Days. Well, I had to stop and take a picture for the blog. Thirteen RT treatments done, twenty six to go.

Radiotherapy
Early Morning Shift

I want to introduce you to members of the St Thom’s Cancer Club (early morning shift). These are the guys I meet every day at around 8 o’clock as we sip water waiting for our treatment slot.

From left to right we are: Muggins, Bassie, John and Charles. We come in early as we all work full-time jobs. They are a cheery bunch, we have a good natter, and I always look forward to seeing them.

Bassie is a business consultant who helps start-ups write their business plans and secure finance. John, with his pleasant Irish brogue, is a security guard at a bank in Canary Wharf and Charles, or Chas, is a mechanic who has his own garage and a passion for MGBs. Both John and Chas are coming towards the end of their treatment. I’ll be sorry not to see them but interested to find who takes their place. Cancer, that most democratic of diseases, means I meet folks from all walks of life who I’d never normally come across. So who says cancer is all bad? Well me and everyone else who’s got it obviously, but more of that in a moment.

Way out

St Thomas' Hospital

We are such creatures of habit. The early crew all sit in the same seats every day.  I face Chas, while Bassie sits to his right and John is positioned a few chairs away to my left. Controversially (such a rebel) I sat in a completely different seat on Friday and so for the first time noticed the ‘Alice in Wonderland’ sign that hangs at the back of the waiting room. What the hell is a Superficial Way Out? I don’t want some back of a fag packet way out, I want one that’s profound and sincere. Typical NHS can’t even fund proper exits.

Doughnut pain

In Radio Days (8) I mentioned the bladder discomfort I’d endured while inside the doughnut and was worried it might happen again. I managed to grab a few moments with Maria who looks after my treatment review and reassuringly, she thought my bladder might have been overly full or had some kind of spasm but was very unlikely to be a product of the treatment on the day. Her only concern was whether I felt fine after I’d had a pee. I did and so far, it hasn’t happened again.

Tough love

Reading posts on the Prostate Cancer UK Support Group I see many people suffer side-effects induced by hormone therapy. They talk about mood swings and heightened emotions with people fine one minute and crying the next.

I too am on hormone therapy, which has some unfortunate side-effects: hot flushes and disturbed sleep, but in general I feel happy and optimistic.

A month ago Mrs Preen called me out for being a bit moody. Being a man and therefore having no self-awareness, I resolved to monitor my temperament.

Long before I got cancer, but when I was having a right old moan (hey I’m 60), she’d call me an old goat. Tough love in the Preen household.

Today after reading posts about mood swings and irritable behaviour I asked her how I was doing and whether I was exhibiting more goat-like tendencies than usual.

First, she asked if I wept quietly when alone. I don’t. Then came this: I’m astonished how cheerful you seem and are greatly improved! All of which left me smiling, but bewildered. Cancer, whatever next?


 

Radio Days (8): Jim gets a bollocking

A bright beautiful autumn day sees me cycling down Albert Embankment, past MI6 and MI5 and then along by the Houses of Parliament where Big Ben is currently boxed in black scaffolding.

The turbid Thames is on my left and I’m thinking how lucky I am to live in the greatest city in the world when out of nowhere one of those huge junk trucks screams by me threatening to snuff out my stupid daydreams. Pay attention Jim and try to get to St Thoms’ in one piece. Locking my bike in the hospital car park I stride in.

The trouble with me is I’m nosey, I like to know what’s going on and I’m a bit pushy. So sitting in my gown waiting for the previous patient to complete his fraction, (This is what medics call individual treatments) I see the radiographers looking at computer screens which I assume show the luckless cancer sufferer’s prostate. Well this looks interesting and of course I want a look and as the team are a friendly bunch I walk over to take a dekko. This brings a sharp reaction, sit down Jim, you’re breaching patient confidentiality. Suitably rebuffed I back off before making my way to the doughnut.

For me this is fraction eleven and despite having decided that on balance I was going to have nothing to do with side effects, a few are kicking in. I need to pee several times a night, my bowel movements are, how to put this delicately, fluid and today during treatment such is my need to pee that it actually becomes painful. Now whether this is the product of nearly a dozen doses of RT or the result of the rays actually hitting my walnut sized prostate I’m not sure, but if it happens again I’m going to seek medical advice. Not nice, but still no signs of tiredness, though as I have more than 20 sessions to get through there’s still plenty of time for that.

Coming out of the RT suite I put my foot in it again. I thought you, dear reader, might be interested in what my RT team looks like when they’re at work, so I bust in like a walrus, whip out my trusty iPhone and take a snap. This is not well received, and I’m given strict instructions to delete it. Given these kind people are firing their ray guns at delicate portions of my anatomy I think I’ll comply. So as much as I’d like to show you my young and attractive team that pleasure is going to be denied. I think I’ve annoyed them enough today.

But I’m not done yet, I still want to see how they monitor the treatment so I’m hoping to persuade them to take a picture of their screens while I’m in the doughnut. Then I’ll stop being irritating, honestly I will…fat chance. 

Time chunks

When I was first diagnosed with PC, like everyone else I was scared, I didn’t know what it meant. Cancer packs a big punch, it’s the scariest bully in the medical playground, did I have weeks, months or years to live? Could it be cured, what treatment would I receive? Reading the Facebook Groups I mentioned last time I see that my experience exactly mirrors most others who get this vile disease. As time goes on you quickly learn, unless your diagnosis is particularly severe, that there are effective treatments and you may have many years ahead of you. Always bearing in mind that the Unwelcome Guest is a slippery bastard, an assassin in your midst, who can’t be trusted.

It’s not just your physical health that cancer messes with, it tends to trample on your mind too. Here’s what I do to keep my head in shape, it’s not the result of any professional counselling, but it works for me.

My treatment comes in chunks, first came the diagnosis then the start of hormone therapy and then a gap during which not much happened. That gap was the wonderful summer just gone, which I thoroughly enjoyed. Of course the threat of cancer was there in the back of my mind, but it wasn’t a constant scourge.

My RT comes to an end at the beginning of November and after that there’s another time chunk until the appointment with my oncologist in January of next year. So from November, through Christmas I’ll enjoy myself and not get too stressed. Of course stress will start to emerge just prior to my appointment, fearing the result of the inevitable PSA test, but I’ll leave that to another day.

The trick is to live in the moment, enjoy the here and now, and don’t get too stressed about the long-term. I’m 64 now, so thinking long-term is for the birds anyway.

Having just re-read the above I see  it comes across as obvious hippy bollocks, but It’s true for all that, so I’m going to let it stand.


 

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.