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Cancer.  It's probably not most people's first choice when thinking of a subject to write about.  Probably not their second choice either.  But it affects a great number of us.  After a friend was diagnosed with prostate cancer, he started a blog (the very excellent "I am the one in three") to raise awareness, and when he found that I'd been diagnosed with it a few years ago, he asked me to write a post for him.

Second chances might only come around once

 

 

 

My Dad died when I was thirty and he was seventy-one.  At the time it all seemed pretty sudden : he was diagnosed, he got worse, then worse still.  And then he was gone.  In reality it was probably more like eighteen months, but looking back across more than twenty years it now seems a bit of a blur.  At the end, he was riddled with cancer, his body emaciated and his brain so affected that he looked at us but didn't know who we were.  But the death certificate suggested that it had probably started with prostate cancer.

 

Born in 1926, he'd smoked for much of his life, and I guess at the time I'd put his cancer down to that.  He'd lost his sister a few years earlier to breast cancer, and some years later, his younger brother succumbed to prostate cancer as well.  But they'd all smoked.  Me?  I've never smoked in my life, and I'm teetotal.  So I was fine.

 

Right?

 

I'm not saying I'm a saint.  I'm more than a little partial to a bit of chocolate, and in my twenties and thirties, I probably put away enough fizzy drinks to sink a battleship, so I've been carrying a bit of extra weight for years.  Large T-shirts gave way to XL, then XXL to the point where 3XL was my go-to choice.  Probably should have rung alarm bells, but I'm 6' 1", so there's plenty of space to spread seventeen stone about.

 

And then in August 2017 I suddenly found myself needing to pee quite a lot.  It had come on practically overnight.  I'd go to the loo, but by the time I'd washed my hands, I felt like I needed to go again.  Just a urinary tract infection, right?.  I bought a crate of cranberry juice and figured 'that'll fix it'.

 

A few weeks later and while things were better, they still weren't right , so gave in to my wife's incessant... encouragement... and booked a doctor's appointment.  I walked in, sat down and explained the symptoms.  It only took her a few seconds and a drop of blood.

 

"You've got type 2 diabetes."

 

Hmm.  It wasn't what I wanted to hear, but when you've had a diet that consisted largely of sugar for decades, you can't really be surprised.  In some ways it was a relief, I said to her.  I explained about the family history of cancer, and that it had always in the back of my mind.

 

She looked at me, overweight and just turned fifty.  "Have you ever had your prostate checked?" she asked.   

 

"No." I said.

 

"Hop up on the bed..."

 

A snap of rubber glove, a squirt of lube, a quick rummage and she declared herself not concerned, but "We'll do a few blood tests to just check you over.  Get them done and come back in a couple of weeks for the results."

 

I had the blood tests done on the Friday.  At 7pm the following Monday, the phone rang at home.

 

It was the surgery.  "You have got type 2 diabetes," they said.  "And we want to put you on statins as you have high cholesterol too.  But we're concerned about your PSA.  It should be about 3.  Yours is nearly 8.  And with your family history, you qualify to see a consultant within two weeks.  Would you like to do that?"

 

Sitting on the stairs on a Monday evening, with my dinner going cold, this was not a question I was expecting.

 

"Um, yes.  Please."

 

"Right.  We'll get on with it.  If you have any questions, ring the surgery tomorrow, and look out for a letter."

 

I put the phone down and told my wife what they'd said.  High PSA count.  A bit concerned.  Should see a consultant.  I didn't sleep easy that night.

 

The next day, I considered things afresh.  Chances are it's nothing.  A false alarm.  To be honest I was more worried about the diabetes.  Once you've got diabetes, you've got diabetes.  But prostate cancer?  That's fixable right?  Fact is, I didn't really know.

 

The next two weeks passed slowly.  I had a letter that gave me a 9.00am appointment but said 'Keep the day free, just in case'.  I'd spoken to my boss and explained why I was taking a day off, but played it down.  "Just being sure." I said.

 

On the dot of 9.00am I was called into the consultant's room, and he asked me to run through what had brought me to the doctor's in the first place.  I related my tale and for the second time I hopped up on the bed, hugged my knees and thought of England.

 

If my GP had been trying to get to my prostate, the consultant was trying to reach my tonsils!  "Well," he declared.  "something doesn't feel quite right.  I'd like an MRI scan."

 

My experience of the NHS to date was that it works at glacial pace.  I mentally planned for another day off. 

 

"They'll expect you downstairs at 10.00am.  Follow the signs and come back here at midday."

 

An MRI scanner is a big machine with a narrow tube running though it.  My shoulders were squeezed and the top of the tube was about two inches from my face.  I was feeling mildly claustrophobic, but fortunately they had to push me so far through the tube to scan my nether regions that my head just poked out of the other end.  The technician put a cannula in my hand, explained that they'd take some images, then inject me with some fluid and take some more.  He then said the machine was really loud, put some ear defenders on me and walked off to start the procedure.

 

The booming was indeed loud, and after about ten minutes I had the odd sensation of my arm going cold as the fluid ran in.  

 

Another ten minutes later and the platform I was lying on slid me out, like Scott Tracy being loaded into Thunderbird 1.  It wasn't worth me going home, so I went back upstairs to sit and wait for midday.

 

Eventually I got called back in, and the consultant was conferring with someone else.  They swivelled the screen round and I looked at what I presumed was my prostate.  I didn't fully grasp what they were saying,  but it didn't sound great.

 

"...so we'd like to do a biopsy.  Are you free at four o'clock this afternoon?"

 

I couldn't think of anything else more important, so yes, I said, I could be free...

 

Normally you associate going into an operating theatre with masked figures, bleeping machines and a sterile, sci-fi like environment with patients in those gowns that don't quite close properly at the back.  I walked in with my rucksack over my shoulder and was told I could leave it in the corner.  I sat down, and the chap who'd been talking to the consultant explained what he was about to do.  You can't actually get to the prostate from the outside without opening you up.  However, what you can do is to stick a needle into your rectum, go through the rectal wall and get to the prostate that way.  Now the rectum isn't the most hygienic of areas, so passing a needle through that carries a certain risk of infection.  "So we'll give you a large dose of antibiotic," he said, giving me the largest tablet I've ever seen.  "And sign here.  If you suffer any untoward symptoms in the next week or so, go straight to hospital.  Do not go to the GP.  Do not wait and see if you improve.  Hospital.  You may have a blood infection."

 

"How bad might it be?" I asked.

 

"Potentially fatal."  He said.  He indicated the consent form again.  "But you'll be fine.  Sign here."

 

Looking back on the whole period of my treatment, the next half an hour was undoubtedly the worst part.  And quite frankly if that's as bad as it got, then I've got much to be thankful for.  Lying on my side, shorts and boxer shorts round my ankles and hugging my knees, they started by giving me an anaesthetic.  And I don't mean in my arm.  Or my rump.  I mean 'in there'.  And then, after five minutes for it to work, they take what I can only describe as feeling like a bicycle pump, and poke it where the sun doesn't shine.  But this is a bicycle pump with a sharp pair of snips on the end, and I feel tiny pieces of... me, being snipped off, deep inside.

 

Several times since that day, I've tried to explain what that felt like.  Normally when someone sticks something sharp into you, it's your arm, or your leg, or your mouth if you're at the dentist.  And you can point to the site of the jab.  But this, this was strange.  It was just... inside.

 

Sixteen times they went in, and came back out with a little bit more of my prostate.  I know, because they were counting them off.  And then that was it.  Done.  When you're ready, hop up and get dressed.

 

As I was signing the form earlier, the consultant had explained that the procedure would mean that I'd see blood in my urine for a few hours, in my stool for a day or so, and in my semen for about a month.  But other than that - fatal blood infections aside - there shouldn't be any side effects.

 

Then it was just a case of waiting for the results.  It was about ten days.  Felt like a lifetime.

 

During that time I did pee blood, but only for the rest of the day.  And there was a bit of blood in the pan when I went to the loo.  I was still sore so didn't really feel like investigating to see whether there were traces of blood in my semen, but eventually curiosity won out, and strictly in the name of experimentation...

 

Let's just say that it was a disturbing sight and move swiftly on.

 

To get my results I went into see a consultant oncologist who, bizarrely, had the same name as my first girlfriend.  She'd been a plastic surgeon, but I hadn't seen her for 20 years.  I wondered if she'd changed specialities.  Turns out there's more than one G. Smith in the NHS. 

 

This Miss Smith didn't beat about the bush.  As I sat down, she introduced herself and then said "Well, thirteen of the sixteen samples that we took are cancerous.  We'd recommend treatment." 

 

She ran though the options.  They could go ahead with what they call 'watchful waiting' which is basically 'Do nothing, but test you on a regular basis to see if the situation's getting worse.'  Then there were a few experimental treatments, but essentially it came down to radiotherapy or surgery.  Bombard the cells with radiation, or open me up and cut it out.  However, should the radiotherapy not work, it would be likely to have caused a lot of internal scarring which would make subsequent surgery far more difficult.  In addition, it turns out that being zapped with radiation makes it increasingly likely that you'd develop some other cancer twenty years down the line.  If you're 75, then there's a good chance that by 95 you'd either be past caring, or wouldn't be around to care.  At 50 though, I was rather hoping to be fit and healthy at 70.  Surgery sounded like the sensible solution, not having been persuaded by the 'Wait and see.' option.  However, I did say I'd like to speak to someone about the radiotherapy, just to be sure.  An appointment was made.  As was another appointment for a bone scan, to make sure it hadn't spread.

 

Speaking to the radiotherapy specialist, he basically repeated what I'd been told, and recommended the surgery.  

 

That then, was that.

 

Meanwhile, because this had all started with what I'd thought was a urinary tract infection, someone decided that just to be on the safe side they wanted to have a look inside my bladder.  So a few days later and I'm back in a treatment room.  By and large, if a doctor wants to look at your insides from the inside, then short of cutting you open, then there are only three ways in.  The biopsy had ticked off one.  Looking at my bladder ticked off the second.  (And as it happens, thanks to an issue with my oesophagus recently, where I had to have a camera down my throat, I've now completed the set.)

 

By now I'd got used to dropping my trousers in front of a room full of strangers.  Some local anaesthetic cream was applied, and everything 'down there' went numb.  I focused on the TV screen over the bed which suddenly went from showing a picture of the operating theatre, to a picture of my insides.  We passed the troublesome prostate "Really quite small," commented the consultant / cameraman, and we carried on to my bladder.  "All looks fine," he declared, "but I'll write and confirm it."  What he neglected to mention was "By the way.  When this anaesthetic wears off and you go to pee it'll feel like a stream of razor blades for the next 24 hours."

 

No - he left me to find that out for myself.

 

Not long after that I went for the bone scan.  This was to determine whether the cancer in my prostate had spread anywhere else.  The process involves injecting you with a radioactive substance, letting it percolate around your body for two hours, and then you lying very still on a table while a machine takes the necessary images.

 

The lady who gave me the injection unscrewed a lead canister and took out the phial.  She then looked at me as someone who has injected many overgrown teenagers with a radioactive marker and said, with a twinkle in her eye...

 

"You're not going to get any superpowers you know!"

 

Darn!

 

Fast forward a couple of weeks.  The bladder check had come back clear, and the radiation test had a) revealed nothing else untoward and b) had not given me the ability to climb sheer walls, fly or turn invisible.

 

I reflected on what had happened recently.  I hadn't even got to the surgery part yet, but by my rough estimate, every penny I'd ever paid in National Insurance during 30-odd years of employment, I'd had back in terms of tests, scans, biopsies and consultants' time.  I will never begrudge the NHS a penny for as long as I live.

 

 

o o o o o

 

 

In years gone by, prostate treatment was carried out in a variety of hospitals, but it had become clear that those that treated the most cases seemed to have the best results, so the NHS decided to focus treatment in just a few places.  The consultant who gave me the news had said that I would be treated at University College Hospital London, and I would have what was known as a Robot Assisted Radical Prostatectomy.  Or in other words, I'd be on an operating table with a four-armed robot, while the surgeon sat over the other side of the room at a glorified Playstation.

 

I went in to meet one of the surgical team, and he went through the procedure.  It would take a couple of hours, he said.  I'd end up with six small scars, I was never going to be able to have children, and depending on how things went, I'd be incontinent for somewhere between a few months to a year.  Or if I was unlucky, for the rest of my life.  And I'd have erectile disfunction.  

 

The scars I could live with, I didn't want children, and given the choice between having to wear an incontinence pad or dying of cancer, I'll take the Tena Lady every time.  As for ED, well we'll cross that bridge when we come to it.

 

The surgeon asked if I had any questions.  I think I did - I can't honestly remember - and then he asked if I was happy to proceed.  I was, and signed the proffered consent form.  This was early September.  How long would I wait for a date I asked, thinking it would be sometime in February or March, and wondering whether I'd be mobile for my birthday.

 

"Oh, about five weeks." said the surgeon.  "Now, are you free this afternoon?  You should go to surgical school."

 

My boss had said to take whatever time I needed, so yes, I was free.

 

Surgical school turned out to be a class of about twenty of us.  We had a wide range of ages and a variety of ethnic backgrounds.  The one thing we had in common was that we all had a small, walnut-sized gland that was trying to kill us.

 

A pair of very jolly specialist nurses spent two hours explaining everything.  What we needed to do before the operation.  What would happen during the operation.  What we'd feel like when we woke up.  What we'd need to do straight away.  What we'd need to do in the following weeks.  What we needed to eat.  Drink.  Wear.  And they introduced us to the catheter that we'd be wearing, post-op.  Every question we had, they answered.  They gave us exercises to do.  They gave us things to think about.  But mainly they gave us things to read.  Lots of things to read.

 

I came home and talked it over with my wife.  I knew they liked to get on with these things, but I wasn't expecting it to be a matter of weeks.

 

I had explained to my boss, plus one or two close friends, what was going on, but other than that, kept quiet.  My team at work clearly knew something was up as I'd started taking days off at very short notice, but now I came clean and explained the situation.  I'd be taking a month off work, post-op, so they really ought to know why.

 

The other person I spoke to was a dear friend from work.  We'd known each other about 20 years, and she'd been through the female equivalent of what I was facing.  She gave me a lot of useful insight, particularly when it came to how your nearest and dearest might react.

 

"It's frustrating for them," she said, "because there's nothing they can do.  You feel in control as things are explained to you.  You have all the information.  They just look on from the sidelines and can't do much, and that can cause friction."  

 

It was true.  My wife and I sometimes didn't see eye to eye.  I felt reasonably calm about the situation.  I was taking the view that this seemed to have been caught reasonably early, and I was fortunate that I was being treated by some of the best people in the country.  I couldn't see the point of worrying too much.

 

My wife did worry though.  On reflection I probably didn't deal with this very well, brushing off her concerns.  If I wasn't worried, why was she?  Not my finest hour.

 

A couple of weeks later I was called back into UCLH.  I'd assumed this was for what the nurses had referred to as my 'pre-op assessment'.  However it wasn't.  There were a team of six surgeons at the hospital who carried out this particular procedure, and the surgeon who'd met me earlier had identified me as 'a candidate for an alternative procedure'.  In other words, a guinea pig.  I now met the surgeon who was going to carry out my op, and he explained to me that as I was relatively young, and fairly fit and healthy, I was a suitable candidate for this 'alternative'.

 

Normally, he said, we'd carry out the op that was explained to you.  However, a couple of Italians have come up with a variation.  It takes a bit longer and it's a bit more complicated, but if it works, then the likelihood of you suffering incontinence is much reduced.

 

Sounded good.  Was there a downside?

 

"Well," he said.  "I'm the only one of the six in this hospital trained to carry out this variation.  I've carried out the regular operation about 950 times..."

 

"And how many times have you done it the new way?"

 

"Eight."

 

I mulled it over for a few minutes and eventually came to a decision.  Doctors learn by doing.  Clearly not everyone was suitable for this procedure, so his opportunities for doing were much reduced.

 

"Sign me up." I said.

 

The next few weeks seemed to fly by.  Within two weeks I'd been sent a date for mid-October.  I made arrangements for people to pick up my workload.  I bought a baggy pair of track suit bottoms that would be comfortable to wear and would have room for my catheter.  I'd been doing my pelvic floor exercises for weeks, and at the request of my surgeon, I'd tried to lose as much weight as I could in five weeks 'So he wouldn't have so much to cut through.'

 

We caught a taxi up to the hospital.  Because my surgeon carried out a list there once a week, I'd been moved to the Princess Grace hospital in Marylebone which was posher than most hotels I've ever stayed it.  I was shown up to a private room, and then we sat.  And waited.

 

I can't remember how long we sat there.  Somewhere between two and four hours I think.  And then a nurse came to walk me down to the theatre.  We walked into the prep room, I hopped up on the trolley and the anaesthetist introduced himself.  I was quite looking forward to this bit.  I'd never had an operation before and lots of people had described the deliciously woozy feeling you get when they give you the pre-med.  You try and count back from ten and it all goes a bit swimmy and you fade out.

 

I don't know what they gave me, but they put a cannula in the back of my hand, and a split second later I was back in my room being shifted from the trolley to my bed.  No hallucinogenic trip for me.  It was like someone flicked a switch and I lost about five hours.

 

Must be what those Texans who get abducted by aliens feel like.

 

Recovery was slower than expected.  They'd been hoping to throw me out the next morning, but for a while my blood pressure was low enough to cause concern, but by early afternoon I'd improved enough to make the Senior Registrar happy.  A nurse had shown me how to use the catheter that had been fitted while I was unconscious, I'd been given some tablets and some anti-clotting injections and before I knew it we were on our way home in a taxi.

 

The next few weeks passed by quite quickly.  For a week I didn't move much, sitting propped up in bed reading.  Then I was getting up and moving about.  Soon I could go out for short walks.  In less than two weeks I'd been called back to have my catheter removed.  While it was a relief in some ways, I'd quite got used to thinking 'I need a pee.  Oh right!  No need to get up!'  The worst bit were the anti-clotting jabs.  I had 28 needles with the correct dose of anti-clotting agent.  You had to squeeze your thigh between your thumb and finger, stick the needle in, inject the fluid and that was that.  After a fortnight I felt like a pincushion.

 

After three weeks I was beginning to think that I ought to be going back to work, but while I might have looked alright on the outside, I wanted to give my insides as much chance of healing properly as possible, so bravely stayed at home and watched daytime TV.

 

One thing I had noticed though, and reported to the nurse when she phoned for a progress update, was that while I'd worn an incontinence pad for a couple of days, I'd found that I didn't need it.  I'd kept up my pelvic exercises, and that, combined with the skill of my surgeon and those two unnamed Italians, seemed to have given me the best possible result.  Thank you, Mr Prasanna Sooriakumaran.  And thank you, unknown Italians.

 

That was nearly eighteen months ago.  Since then I've had blood tests every three months, which have, thankfully, been clear.  Those tests will carry on for ten years, with decreasing regularity (as long as they stay clear).  I do have to take a variety of tablets every day for the ED, the cholesterol and the diabetes, but I'm working on losing weight.  It's been suggested that I was borderline with the diabetes, so shift a stone or five, and I could be off the tablets.

 

Having been so fortunate with the cancer, so lucky that it was picked up and treated so fast, it seems foolish not to give my health the best possible chance.  I still have a bit of chocolate now and then, but not as much as I used to.  I hardly touch fizzy drinks these days.  And I get a bit more exercise than I used to.  I'm not going to be troubling the GB Olympic team any time soon, but I'm gradually getting into shape.

 

I was given a second chance that my Dad never had.  

 

I'm not going to throw it away.

 

 

o o o o o

 

 

 

Postscript

 

 

After reading this, Peter asked me what I wanted other people to take away from it.  I've been thinking about that for a few days.  

 

First off, take care of yourself.  Whatever your age, and whatever your lifestyle, there are bound to be some simple choices you can make to tip the odds just a little further in your favour.  Just make some changes to your diet.  Lose a bit of weight.  Get a bit more exercise.  It might not prevent you, or your loved one, from getting prostate cancer, but then again, it can't do any harm.

 

Second, if you're in a group that are prone to prostate cancer, be that race, weight, age or any combination of those factors - and Peter's blog can give you plenty of information about that - then get checked.  You might have to push a bit.  You might have to be a bit awkward, a bit forward, make a bit of a nuisance of yourself with your GP.  But this is your health we're talking about.  You don't have to be rude.  Just firm.

 

And lastly.  If you do find yourself sitting down with a doctor who gives you the serious look followed by the news that you didn't want to hear, remember : you're not alone.  There will always be someone.  A wife.  A partner.  A friend.  Maybe a colleague.  Someone who will help.  Maybe they'll give you advice.  Maybe support.  Maybe they'll just be someone who'll listen when you're worrying.  Don't take that help for granted.  Most of the time you'll - unsurprisingly -  be focused on yourself.  But if they care about you, they'll be worrying too.  They won't want to put that burden on you, but they're going through it with you, every step of the way.  Be grateful.

 

And if you are currently in a battle with that killer walnut - I wish you the very best.

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