Stats Angst

I think I have Stats Angst. Given that I’m almost entirely innumerate this is hardly surprising; it took me three attempts to pass maths ‘O’ Level. Show me a spreadsheet of numbers and initially I panic and then my brain fogs up as the figures swirl in front of my eyes. Me and numbers, we don’t get along.

But the Stats Angst I’m talking about here is a little different and of course cancer related. Eagle eyed readers of this blog will know that I’ve been on hormone therapy for over a year and have completed a two-month course of radiotherapy.

My cancer or hopefully lack of it will be monitored in the coming months by a simple PSA blood test. The last reading taken in June came in quite low at 0.8. I’m due for the next test in a couple of weeks prior to seeing my oncologist. Obviously, I’m hoping the number is even lower as this figure becomes the benchmark in my efforts to boot out the Unwelcome Guest. Despite being told it’s unlikely, I’m now scared the damn thing will have gone up rather than down. Hence the angst.

When having a consultation with the oncologist, I never quite know how to pitch the words I choose. Inevitably, given my condition, treatment and side effects there’s a fair bit of urological chat. So, what do I say? If I talk about excreta or faeces, I sound like a first-year medical student. If I talk about poo, I sound blushingly coy, in effect using baby talk. If I talk about shit, I sound like an oik. Cancer, it’s not just your health you have to worry about, it’s your vocabulary too.

The oncologist should be able to tell me how the Unwelcome Guest and I are getting along and what my prognosis looks like. Of course, I’m hoping she’ll say the Unwelcome Guest looks like he’s had seven shades of shit kicked out of him. Or words to that effect.


 

I’m making a list, I’m checking it twice

Technically I was tidying but really I was rummaging through a cluttered cupboard in my home office. I like to think of this as my man-cave but in a small house in central London it’s more like a man-cupboard. The rummage produced a list. Now to he clear, I like lists – a lot because:

  1. They help me keep on top of work.
  2. Stop me forgetting things.
  3. And allow me the joy of putting a little tick next to a completed job.
  4. Some people cross things out once they’ve completed a job but that carries a huge risk of not being able to see what you’ve done. No serious list maker would stand for that.

Christmas is the time of year when lists come into their own, with Santa’s Naughty & Nice list setting the Gold Standard, though to be fair to the fat, bearded chap I check my lists a great deal more than twice.

Inevitably, given the nature of this blog, the list I’m talking about is a little less full of festive fun. Prior to my prostate cancer diagnosis, I’d spotted blood in my urine which prompted me to go to the doc and set me off on my cancer capers.

What I’ve not mentioned before is that two years earlier I had also been peeing a small amount of blood and had sought medical help. On that occasion, following various tests, I was given the all clear though not surprisingly the question: ‘did they miss something?’ has popped into my mind on more than one occasion.

Which brings me to my uncovered list which were the notes I took at the time during a consult with a urologist at Guy’s Hospital.

  1. Benign cyst on left kidney.
  2. Enlarged Prostate. May cause problems in later life.
  3. No sign of tumour or cancer.
  4. Blood (in urine) probably caused by prostate.
  5. CT scan of kidney in case ultrasound had missed anything, ruled out cancer.
  6. Blood should go away, can take drugs for prostate, but these can have side effects.
  7. CT scan 3rd September at St Thomas’ Hospital.

So, what to make of that? Well I’m certainly no doctor, but it looks like they did all the analysis necessary though of course the enlarged prostate is the giveaway. I love the idea that it ‘might cause problems in later life’. I’m pretty sure I had in mind when I was 80 or 90 not just two years down the track. Unfortunately, it looks like the Unwelcome Guest had already made a booking.

I suppose if I have a criticism it is that I should have been put on what is called Active Surveillance and monitored more closely.

I’d forgotten I’d had the CT scan on 3rd September which is my birthday, but remember feeling deliriously happy when I saw the urologist for the last time and was given the good news.

Two years later after I’d started again on the unlovely round of tests, I remember telling Mrs Preen I had a strong conviction there would be no free pass this time. Unfortunately, I was right.

But let’s keep the doom and gloom at bay at this time of year. I’m feeling fine and the radiotherapy side effect, needing to pee all the time, is gradually going away which means I’m sleeping more and feel less tired.

Given the nature of this post, I guess I’ve got to finish with a list, so I’d like to shower seasonal goodwill on all of the following:

  • Those who have their own Unwelcome Guest.
  • Loved ones of those who do.
  • Friends and family who worry about me.
  • And anyone else who’s along for the ride.

Happy Christmas, Happy Holidays and Happy New Year. I’ll be back at the start of our next solar orbit.


Cancer can be so irritating

Despite my best efforts to forget about it, cancer has the irritating habit of unexpectedly shouting through the letterbox – I’m still here you know, stop ignoring me.

An NHS letter flopped on to the mat a week ago containing a bowel cancer screening kit. As far as I’m aware this is sent every couple of years to everyone in the UK over sixty. The process involves smearing faecal matter on to a card and mailing this unlovely package back to the bowel cancer screening programme in Watford. If the sample contains blood, further investigations are required as this might indicate bowel cancer.

So, I literally got my shit together and sent it to Watford only to receive a letter back saying: ‘The result from your test was unclear. An unclear result means there was a slight suggestion of blood in your test sample. Receiving an unclear result is not unusual and does not mean we think you have cancer.’ Note to Watford, I do have cancer but hopefully not your variety. I don’t want to be greedy and isn’t one type of cancer enough for anyone?

Having just finished radiotherapy for prostate cancer I was warned I might see blood in my either my urine or bowel movements. I haven’t but I’m hoping that’s what the bowel test picked up rather than anything more serious. I’ve now packed off another completed kit to Watford, they clearly can’t get enough of this stuff, and will await their response.

Fit & Healthy

Keeping fit and healthy may not help you beat cancer, but Macmillan the cancer support charity certainly think it helps. They list these benefits that physical activity can promote:

  • Reduces tiredness and some treatment side effects
  • Reduces anxiety and depression
  • Improves your mood and quality of life
  • Strengthens your muscles, joints and bones
  • Looks after your heart and reduce the risk of other health problems

I’ve been going to the gym to keep trim, which when you’re on hormone therapy is a bit of a battle. Last week, in an added effort to beat the Christmas bulge I attended my first aerobics class in what must be twenty-five years.

I shambled in behind beautiful, lithe young twenty-year olds feeling like an archaeologist’s fossil, only fatter. Have you ever noticed how gravity seems to have no effect on the young? They ignore it and dance through the air as if they were in space, whereas gravity takes one look at me and adds ten kilos to each of my legs.

Just then a stocky, well-muscled young man entered who was obviously the trainer. The room fell silent as he announced in a booming voice: ‘Hello my name is Volkan, I am from Turkey. They call me ZEEE VOLCANO.’

Well that was an hour I won’t forget. If I’d had the energy I’d have gone straight to A&E. But guess what? I’m going back tonight.


The year of living cancerously

It’s now almost exactly a year since I discovered the Unwelcome Guest had set up shop in my prostate. The presumptuous little bastard.

To celebrate, and I’m going for gold in the most inappropriate use of an English word, I thought I’d look back on my year of living cancerously; not so much at the treatment and side-effects but rather at what it does to your life. SPOILER ALERT: It’s not all depressing.

One in two people in the UK will develop cancer at some point so to some degree it’s a shadow that hangs over us all but make no mistake there is a significant difference between a potential threat and the real deal. If you become a member of the cancer club, the club that nobody wants to join, it packs a punch. When the doctor looked at my scan and I got my first glimpse of the Guest, I broke into a sweat, felt faint and thought I’d collapse but lay down and gathered myself. I cried when Mrs Preen and I parted at the tube station.

Take the following thoughts and questions, mix them in a blender, and you’ll get a sense of how it feels in the first few days: What is a PSA test? How much is the biopsy going to hurt? Will I be here next year? What do I tell my 15-year-old daughter? What’s a Gleason score? Why me you bastard? For best effect have these going around your head at three in the morning while working up a muck sweat of worry.

Catch cancer early and you have a decent chance of survival. Fortunately my cancer was mostly contained within my prostate with the Guest just nudging one lymph node. When AA Gill was diagnosed with terminal lung cancer, he described himself as having the Full English. Mine is more of a continental breakfast, but no one should ever get complacent; what was once a croissant can soon become a fry-up.

In 2008 PJ O’Rourke was diagnosed with a treatable form of cancer. He quipped: “I looked death in the face. All right, I didn’t. I glimpsed him in a crowd.” I guess the same goes for me. I once got drunk with PJ in Mogadishu when we were both there working for ABC News. We quoted Auden and Yeats at each other, pretentious little pricks, but I’m happy to say he’s still very much alive.

Pretty much at the outset I was given a 50/50 chance of my cancer being cured and if not cured, was told it had the potential to be managed successfully for a number of years. Dan, a fellow blogger, and prostate cancer patient has a warning: ‘Once you introduce the word cancer into your vocabulary, it never goes away, even if the disease does. There will always be that little cloud called “fear of recurrence” that will follow you around for the rest of your days’.

Perhaps its superstition or perhaps it’s just good sense but Dan’s wary of ever saying one is cured or cancer free. Maybe it’s like being an alcoholic, you are only ever a recovering alcoholic even if you haven’t had a drink in 30 years. He likes the acronym NED, ‘no evidence of disease.’ Saying you’re cured is dangerous; you may think you’re done with cancer, but cancer may not be done with you.

I follow a Facebook page ‘Prostate Cancer UK Support Group’ where others with their own Unwelcome Guests post their stories, conditions and questions. Many are poignant, funny and some unbelievably sad. I’ve seen posts detailing men who are diagnosed while still in their forties and early fifties, which seems so unbelievably unfair. Many also find the treatments that I’m on such as hormone therapy and radiotherapy almost unendurable. While everyone’s treatment will differ so will their reaction to the treatments and side-effects.

But of course it’s not just the patient who has to live with cancer, his family are also on the same unwelcome journey. Right from the outset I took the decision to be upbeat and to make the journey as bearable for them as I could.

Yesterday Mrs Preen and I took the dog for a longish walk in the countryside and I asked what it was like to be married to a husband who was foolish enough to develop prostate cancer. Her answer came in two equally surprising parts. First, she said she was worried she didn’t worry enough about me! Not, she was quick to reassure me, because she didn’t care but because she was convinced all would be well. She said that if on balance I’d like her to worry more she would get right down to it.

I’ve mentioned this before elsewhere, but she said she continues to be astonished at how remarkably upbeat I am most days and actually less grumpy than prior to my diagnosis. I guess all wives can use a less grumpy husband, but why this should happen after contracting cancer seems to defy logic. But you know what? I’m not going to dig too deeply into the whys and wherefores and just be happy that’s the case. There’s plenty of time to be miserable should the Unwelcome Guest decide to go medieval on me.

And what of my teenage daughter, what are her thoughts? She knows I have cancer, but I rarely mention my condition or treatments. I’ve done this to protect her, but it occurred to me that my cancer might be seen as off limits; something that shouldn’t be mentioned. What could be worse than fretting about something you can’t talk about? So, we had a chat about it and apparently her mother had told her that dad wasn’t going to die anytime soon and that had offered enough reassurance. At 15 there’s lots of other stuff going on and heaven knows I don’t want to be a worry when the spectre of GCSEs is causing enough terror all by itself.

When you tell people you have cancer, they don’t say it, but their first thought is, he’s going to die soon. That’s a reasonable assumption because that’s exactly what I thought when I was first diagnosed. I’ve got a pretty good shot at traveling on a few more years but I don’t know for sure where I’m headed and at some point, it might not be in a very desirable direction. Then I reserve the right to be less cheerful. But right now what cancer gives me is all the encouragement I need to live in the moment. When I was young the future was like a huge jigsaw puzzle that I’d construct when I finally got around to it. At almost 65 and living with cancer, the future is now.


Radio Days (13): Last Blast

On Wednesday of this week at 9.15am my prostate was blasted for the last time. My 39 rides on the doughnut of doom are complete and hopefully the Unwelcome Guest has been given all the encouragement he needs to fuck off.

But the doughnut wasn’t going to give up without a struggle. On Tuesday I was attending a work conference and sat on a panel dispensing words and wisdom and a couple of laughs on the stuff I do for a living. Talking in public meant my phone was switched off so I missed a call from St Thom’s radiotherapy department telling me the doughnut was busted and my final treatment might be delayed. So close to the finishing line and now this. I called RT, but nobody picked up, so I left it until first thing Wednesday, but then the number was constantly engaged. As regular blog followers will know my RT treatment has by no means been bad, but I really wanted it over.

Also I’ve made friends in the waiting room of doom and wanted to say a fond farewell to certain members of the early morning cancer crew.

Mulling over what to do I decided to head out as usual to St Thom’s even if I had to wait all day for the doughnut to be fixed. A friend of mine recently asked if my experience had put me off eating doughnuts. To which my answer is, if any reader wants to send over a box of Krispy Kremes, they won’t go to waste.

Arriving at St Thom’s it was just Aaron, ace radiographer, and me. He was on the phone but gave me the thumbs up to say the doughnut was in peak condition and ready to give Preen one last ride. Slowly, other RT technocrats started assembling and I started drinking my 350ml of water.

Alan and Peter, two of the cancer crew, arrived as they’d not heard the doughnut was broken, so I was delighted to be able to say goodbye to them and wish them well. It was Peter’s last blast too but unfortunately Alan still has around 12 fractions to go.

So there we are drinking our water and gabbing away as we do every morning. Unfortunately, it takes a while for me to be called through so when I’m lying in the doughnut I’m absolutely bursting for a pee, but it’s going to take an earthquake to stop me seeing this through and anyway it seemed disrespectful to piss all over the doughnut which has been doing so much to see off the Guest. Treatment complete I slide out of the doughnut, get my picture taken and leg it to the toilet. Doughnut done and dusted.

Friends have been so kind sending me jovial upbeat messages, Sarah & Tim sent a bottle of bubbly and I bought myself a litre of Jack, so I may not be quite so sober as I have been for the last two months.

All that remains is for me to thank the radio stars who have administered my treatment with caring professionalism and not a little humour. The NHS is blessed to have: Naeema, Rafiq, Helen, Damon, Orla, Georgia, Aaron, Eileen, Catherine, Hodma and Sharan.

Nothing now happens until January when I take a blood test to check my PSA level and talk with the oncologist about the next moves to keep the Unwelcome Guest off my back, not to mention my prostate. I plan to enjoy Christmas and put Jim’s cancer capers to the back of my mind.


Radio Days (12): Light at the end of the doughnut

With thirty-six rides on the doughnut of doom complete, there are only three more to go. By 10am next Wednesday my radiotherapy treatment will be complete; there’s light at the end of the doughnut.

Today Mrs Preen and I attended my final treatment review session with Maggie who seemed pleased with my progress. Not much has changed as far as side-effects go, though at night I’m wearing out the carpet on the way to the loo slightly more frequently. About three weeks ago this was getting to be quite a drag and lack of sleep was making me feel as tired as a teddy bear. It’s amazing how the body can adjust, because now, even though bog attendance has increased, once back in bed I generally go straight back to sleep. Feeling more rested, I managed to stay up until 10.30 last night; so rock & roll.

Maggie warned that for a week to ten days after treatment the side-effects may get a little worse but by strength of will and force of character, I’ve decided that’s not going to happen to me. Let’s see who wins, me or the doughnut.

For anyone reading this who’s about to start RT all I can say is that it wasn’t so bad though of course everyone’s experience differs. Alan, one of the early morning cancer crew, has found sleeping very difficult as he’s trudging to the loo on the hour every hour. The poor guy looks tuckered out.

I’ll be glad not to have to slog to hospital every morning, but the bicycling has kept me fit and I’ve continued to work throughout, though perhaps not quite at full speed. (Don’t tell the boss)

On our way out the door Maggie handed me a sheet detailing support group meetings for prostate cancer patients. At the end of every month there’s an event called Prostate Life! (their exclamation mark, not mine) where guest speakers are invited to talk on subjects ranging from ‘Prostate Cancer – what is it?’ to ‘Psychological issues and managing stress’. Interesting stuff and no doubt you’ll want me to put your name on the door, but the one I’ve got my eye on is The Festive Meeting on 28th December. Obviously, I’ll be wearing my Christmas jumper, but what does one take to a festive prostate cancer meeting? Frankly the mind boggles.


 

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.