26
September

Fight Club

It has been a week of baby steps and milestones for me since D (for ‘diagnosis’) Day.  I have made no further progress into the Understanding Prostate Cancer booklet I was presented with, having swiftly come to appreciate that holiday reading it ain’t.  The sterile descriptions, while important to know, need to be tempered with good news stories of successful recoveries and reassembled lives.  If you try to digest the raw clinical data undiluted, you risk sliding into a world of corrosive self pity you can ill afford.

Good news anecdotes about prostate cancer are certainly plentiful and encouraging.  But details about the pertinent PSA and Gleason scores, which right now are of most concern to me, are usually missing.  I take after my apostolic namesake and tend to believe what I can see with my own eyes or understand through the application of logic and reason.  So I have to make a decision to take comfort from the anecdotes and to believe, despite misgivings, that the future looks bright.  This is not an easy thing for a doubting Thomas to do.  But when you have cancer you learn a lot of new stuff about yourself that you didn’t know before D-Day.

A recurring theme of the past week is telling people with expertise or experience of cancer about my respective PSA and Gleason scores of 9.5 and 9.  The reaction is always the same – either awkward silence or gentle agreement that it is “not good”.  I can almost hear Corporal Jones of Dad’s Army inside their heads: “Don’t Panic! Don’t Panic!” he screams, as they maintain a straight face.  So I don’t put them in the uncomfortable position of pursuing what they really think about it or whether they know anyone who has recovered from such apparently unfavourable odds.

To be fair, one friend did know someone who made a full recovery from prostate cancer with very similar PSA/Gleason scores.  As well as that, Eileen on the Irish Cancer Society helpline speculated that my scores could indicate that the cancer is “locally advanced” but confined to the prostate.  It may be a long shot but there is really no point trying to second guess the bone and MRI scans, of which I have still heard nothing official.

Catherine, the prostate nurse in the Mater, told me that hopefully I’ll have the scans in the next two or three weeks.  Bruising from the biopsy, three weeks ago, would show up on scans and would be difficult to distinguish from the cancer itself.  It didn’t occur to me at the time to ask how this affects a bone scan.  But I waited long enough to get the biopsy and then, again, its result.  As much as I dislike waiting, patience is a skill I am learning and I reckon it will take me another couple of weeks to clear the decks mentally for the approaching fight.

Picking up the phone to the cancer helpline was a hard call to make, being my first practical, external acknowledgement of my condition.  I could have been put straight through to a man who has been through what I have just started.  But I was not ready for that yet, telling myself I should read up more first.  Another early milestone was reaching out to the ARC Cancer Support Centre, in Eccles Street.

Both Catherine and Eileen had advised me to contact ARC as they offer good support services to cancer patients and their families.  On checking their website, I found that ARC is an excellent facility, providing practical and emotional supports like counselling, relaxation therapies and a drop-in centre, all conveniently located on the same street as the Mater Hospital.  So, following an initial phone call, I visited ARC to check it out, introduce myself in person and cross the threshold into the cancer support community.

Waiting for the door to be answered, I found myself feeling the role of cancer patient beginning to fit, acceptance settling.  Mary opened the door and invited me in to the interior of comfortable seating and shelves of books about living with cancer.  Of equal value were newspapers and other reading material, because cancer subject matter gets tiresome after a while.  The centre immediately struck me as an ideal place of respite for Colette during the difficult days approaching when I will be in the Mater across the street.

Chrissie joined us as I briefly outlined my case, including my PSA/Gleason scores, which drew the by-now predictable response.  I described how I felt I was braced for my cancer by seeing my parents dying of it and my concerns for Colette, as she had not experienced the disease this closely before.  I knew what she was about to be faced with and that she would need more support than I could provide.  But Mary and Chrissie said she is welcome to drop into the centre any time, if only to get a break from the hospital ward to have a cup of tea and to read a paper in the conservatory, or to talk to somebody in an informal environment.  There may be things she needs to get off her chest that she cannot talk to me about and these are the invaluable supports that ARC is there to offer.

Catherine, the prostate nurse, had recommended an ARC yoga class for men with prostate cancer, to help prepare physically for surgery and mentally for the time leading up to and following it.  I have always wanted to try yoga but I never did anything about it.  Classes in the community are almost entirely made up of women.  I like the company of women but being a token male in a room full of leotards and leg warmers would make me feel like a bit of a girl’s blouse.  Now that I belong to an exclusive club I might as well avail of whatever silver lining it makes available and I start yoga classes today.

The yoga class will also be my first time to meet other prostate cancer victims – another milestone.  I can’t help thinking of Meat Loaf in the movie Fight Club, where he attended a support group for men with testicular cancer.  Yoga won’t be as spectacular as a group of alienated, stripped-to-the-wait men beating the shite out of each other in a basement.  But the tenuous association with one of my favourite films of all time is still pretty cool!

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21
September

Bowel Cancer & Fashion Accessories

Bowel cancer, given the Podge & Rodge treatment, on behalf of the Irish Cancer Society. Pure Class!


This next video is one of my all-time personal favourite YouTube videos!

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19
September

Day 4: Let the Games Begin

Given the choice of waking up with a hangover or not, I’d choose the former at the moment.  The comforting, Bushmills-induced fog of a hangover means you get to coast through the day not thinking about cancer too deeply.  The whole scenario seems surreal and hard to believe, effectively parking it for the day.  Alas, reality bites eventually and you still have to face the mornings where your first waking thought is “shit, I have cancer!”.

For me, getting my diagnosis on a Friday gave me the buffer of the weekend to absorb the initial impact.  I say “initial” impact because there is an aftershock every time a penny drops about all the individual consequences of having cancer and how it is treated.  When I said on Day 1 that I would “cheerfully” pay the price of urinary incontinence and/or erectile dysfunction to stay alive, maybe I was overstating it just a tad!

The pamphlets that sat studiously ignored on the coffee table for two days got picked up yesterday.  While Grace watched Little House on the Prairie, I started reading up on what lies ahead.  Most of it was what Prof. FitzPatrick had already told me.  But now my wits had gathered sufficiently for the import of it all to start sinking in.  It was not encouraging reading.  My PSA level is 9.5 and my Gleason Score (a measure of the aggressiveness of a cancer) is 9 out of ten.  Not good.

I am not a betting man but I am a project manager, so risk management is one of the things I do.  Risk is the product of impact and probability, usually expressed as high, medium or low.  Well, the impact is high – that’s a given.  Taking PSA level and Gleeson Score into account, if I was a betting man, I’d be putting my money on the cancer having spread by now.

Already I can hear the medical professionals, family, friends and well-wishers chastising me for indulging pessimism.  There is always hope, of course.  But it is science and a shit-hot medical team that’s going to get me out of this mess.  I prefer to prepare for the worst while hoping for the best.  If the worst doesn’t transpire it’s a bonus.

If the cancer has spread to my bones and/or organs it may be in isolated hot spots that are treatable with radiotherapy.  I’m going to have to wait for the results of the bone and MRI scans for that.

‘Wait’ has taken pride of place at the top of my list of most hated words!

Apart from the aggressiveness of the cancer itself, the pamphlets went into the gory details of what it means to have your prostate removed.  For starters, the official name for the operation is “radical prostatectomy”.  Not just ‘prostatectomy’, mind you.  Oh no – nothing so mundane for moi!  My prostatectomy is going to be fucking RADICAL, baby!

I didn’t finish reading the pamphlet, having to put it down after reading about urinary incontinence and before starting the section on erectile dysfunction.  There’s only so much hilarity you can take in one sitting!

In the meantime, I simply have to just get on with life.  Sunday was a good day, taking Grace and her friend to the Sealife aquarium in Bray.  Sitting before the large tank full of sharks and exotic marine life swimming to and fro is therapeutic for anyone but even more so for someone with a tremendous weight on their shoulders.  I recommend it.

Returning to work is the first step to resuming some kind of normality.  Not many know about my diagnosis, which is not by design.  It’s just the way the cookie crumbled and I need to focus on closing out my existing project before I have to start taking time off for treatment.  I work with a great bunch of people and there are much needed laughs to be had.  Des returned from getting a coffee to say there was a media scrum outside the FitzWilliam Hotel.  He asked one of the hacks what was going on and was told that the Hunky Dory girls were about. Imagine his disappointment when who emerged but Dana Rosemary Scallon!

The final event before I head for home today is something you could not make up.  Three days after being diagnosed with cancer, I will be attending a focus group that I was invited to a month ago (I’m on their mailing list as a regular donor).  It’s hosted by the Irish Hospice Foundation and the subject is a forthcoming initiative called ‘Think Ahead’ – a means for people to register their wishes around treatment in the event they cannot speak for themselves, including resuscitation and funeral arrangements.  Now THAT’s funny!  :-)

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17
September

Day 2: Tick Tock

My second day as a cancer patient started, as I dare say it does for many of us, with a hangover.  Having said that, the rest of the day after leaving the hospital yesterday wasn’t as bad as I would have imagined.  Sure, there were some tears but only in brief bursts.  Starting a blog was cathartic and it gives me an outlet to get stuff off my chest instead of wallowing in self pity.

With the experience of both my parents’ cancers under my belt, I was under no illusions about life being ‘fair’.  So when I was diagnosed I did not have to struggle with the feelings of outrageous injustice that might otherwise have been the case.

It was like that when my father was diagnosed and I did not deal with it well at the time.  The poor man had quit smoking five years before.  But after 60 a day for most of his adult life, the damage had already been done.  He was given three months to live but only got half that.  It was very traumatic for all of us to see him being taken so quickly and unceremoniously.

When my mother was diagnosed with ovarian cancer it, of course, came as a terrible blow.  But she responded well to the treatment and got a year of remission.  However, despite appearing to be in good health, the cancer returned and took her away from us last year.

So by the time it came to my turn for a diagnosis, I was as prepared for it as I could be.  Prof. FitzPatrick was at pains yesterday to stress that the plan is to cure my cancer.  So that is the plan and life has to go on in the meantime.  There is also my six-year-old daughter, Grace, to consider.

Naturally, we’re not telling her there is anything wrong.  When the time comes, we’ll have to explain Daddy being in hospital for a week, when I go in for the surgery.  But we’ll cross that bridge when we come to it.

In truth, the absolute worst thing about having cancer is the thought of your young child at your funeral and your not being around to see her grow up afterwards.  I’m a long way from that scenario being borne out and hopefully Grace will be a grown woman by the time my time comes, hopefully at a ripe old age.

I have never been one to fear death in itself.  I like to think I have a healthy, philosophical attitude to the great inevitability that every one of us faces sooner or later.  I’ve never really understood the social taboo about discussing death except in a religious context (which I don’t subscribe to) or in the most superficial, clichéd terms.  Life is only a ‘temporary little arrangement’ (to paraphrase Albert Reynolds’ famous description of a past coalition government) so there is no reason why anyone should feel cheated by or morbid about dying.  We are all going to die.  It’s just a question of when and how and, not least, how we live our lives in the meantime.

I don’t know what the statistics are for recovery from prostate cancer but I’m hearing a lot of anecdotes about men who have survived it.  By all accounts, if you’re going to get cancer, prostate is the one you want!  Suffice to say, I will be looking into this further so I hope my research bears it out.

It would be a mistake to take from the above that I’m fatalistic about my cancer.  I’m actually feeling generally positive about it all.  I’ve always liked the saying ‘that which does not kill me makes me stronger’.  What will be will be and if I survive this I’ll be a better person for it.

What worries me now is what the bone and MRI scans will reveal.  I’m actually looking forward to the surgery to have this troublesome gland whipped out and good riddance to it!  But if the scans show that the cancer has spread from my prostate I’ll be in trouble.

I really, really hope the scans will tell me what I want to hear.  I had hoped the biopsy would do that but it didn’t.

So it’s a waiting game. Tick tock, tick tock……

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16
September

Day 1: “You Have Prostate Cancer”

Well, it’s official as of this morning:  I have prostate cancer.

It’s a diagnosis I was acutely aware would be possible, though I did hope I’d be given the all clear this morning, two weeks after the biopsy and less than three weeks before my 44th birthday.

My father, Peter, died of lung cancer on 19th October 1997 and my mother, Rita, of ovarian cancer last year, on 7th March.  With a cousin in remission from breast cancer and an uncle (her father) currently undergoing chemotherapy, there was no doubt of a family history of cancer.

Still, with my age and the fact that I have no symptoms of prostate cancer (apart from an elevated PSA that only came to light by accident), I dared to hope that I would continue on to work from my appointment in the Rapid Access Prostate Clinic in the Mater Hospital this morning, with good news under my belt and a new spring in my step.

It was not to be.

Having watched both parents living with and ultimately dying from cancer, I can’t say it’s come as a complete surprise, shocking though the diagnosis still is.  When you see both your parents die from cancer, the first thing you lose is the complacent believe that cancer is the kind of thing that only happens to ‘other’ families.  It doesn’t.  Cancer happens to my family.

It all started on the June bank holiday weekend.  I’d been experiencing a constant but mild headache for about six weeks.  It was more a minor irritation than anything else.  At the time I put it down to stress or eye-strain.  I’m an IT project manager, so stress is an occupational hazard, and I spend most of my days in front of a laptop.  So I wasn’t unduly concerned about it, thinking it would just pass like these things usually do.

But at 4am on Sunday 5th June I awoke with a headache that was anything but mild.  My wife, Colette, phoned the doctor on call and I went to Our Lady’s Hospital in Navan.  There, it transpired that my blood pressure was extremely high and I was informed I was at risk of stroke.  Hypertension is a very treatable condition, though, and with the right medication I could live a perfectly normal and long life.

Happy days!  I’d got a warning shot across the bows and would, from now on, take more active care of my health.  No more would I sweat the small stuff and I’d stop to smell the roses from now on.  You know, the usual stuff that lasts about as long as a New Years resolution.

Anyway, there was a routine blood test to be done so that went off to the lab and I’d follow up with my GP in Ashbourne.  There were a few things out of the ordinary like high cholesterol and very high iron levels.  Nothing that couldn’t be managed.  But there was also the matter of an elevated PSA level that stood out.  PSA is a protein produced by the prostate gland.  There are a number of reasons for it to be elevated, cancer being one of them.  However, PSA alone is not a reliable indicator of anything and further tests are called for.  So my GP referred me to the Rapid Access Prostate Clinic in The Mater Hospital, Dublin.

After two weeks waiting for the dreaded and euphemistically named “digital” examination, I was in The Mater.  I had expected that I’d have the aforementioned examination first and if the doctor didn’t like what he felt (less than I did, that is!), he’d send me for a biopsy.  Imagine my surprise when he told me that my PSA level was so high, I’d be getting the biopsy anyway.  I didn’t like the sound of that and had still to suffer the indignity and discomfort of the “digital” exam.  But it was a “quick in/out” as they say and the doctor was a perfect gentleman about it!

The biopsy was another matter.  It was much more invasive, uncomfortable and prolonged.  The staff were brilliant though and made me feel as comfortable as possible under the circumstances.  They tried to reassure me that PSA is not a reliable indicator of cancer and chances are I’d be fine.  It would probably be nothing more than an inflamed prostate but I’d have to wait for the results.

Two weeks later (today) and I’m on my way into the Mater to meet Prof. John FitzPatrick for the verdict.  I have been apprehensive but hopeful of the outcome and had planned to go into work in St. Stephen’s Green after getting the good news.  Colette came with me but we took separate cars, so confident were we that the rest of the day would be business as usual.

Sitting in traffic on the Finglas Road, an ad comes on the radio for the Irish Cancer Society.  “Have you recently been diagnosed with cancer?” it asked, offering a phone number to ring for help and support as a new cancer patient.  I’m not a superstitious person but I didn’t like the sound of that on the way to get my biopsy results.  Don’t be silly I told myself.  That ad has probably been playing for weeks but I didn’t notice it until now.

So I’m in the waiting room at the hospital, waiting for Colette to arrive after finding parking.  I’m reading the news on thejournal.ie on my smartphone when an article jumps out at me.  It’s a woman’s description of being told she had an 85% chance of breast cancer.  That’s two omens now.  I don’t like the way this morning is shaping up.

I don’t get to finish the article because Colette arrives.  While we’re talking, an older man emerges from the rear of the clinic, smiling.  He’s greeting his friend who is waiting for him and talking cheerfully on the phone.  It’s good news.  He’s in the clear and joking that he could have had a heart attack from the anxiety of waiting for the result.  Well, fair play to you, I congratulate him in my mind.  The first of many to leave this place with good news this morning, I hope.

Two minutes later, my name is called from the back of the room.  Colette and I brace ourselves, get up and go in to see Prof. FitzPatrick.  It’s the same room I met him in two weeks ago but this time there is also another doctor and a nurse present.  I don’t like the look of this.  I introduce Colette and Prof. FitzPatrick says he’s glad we’re both there.

Without making eye contact, Colette and I think the same thing: “oh fuck!”.   This is the bit I’ve been really dreading.  But protocol demands a certain amount of preamble.  Prof. FitzPatrick starts by summarising where we were at two weeks ago.  I had a very high PSA level and a strong family history, yada, yada, yada.  “So we were expecting to find something” he said.  “And you did”, I finished his sentence for him, anxious to get to the point.  “Yes, we did” he confirmed.

So, there it was.  I am now officially a cancer patient.  Not the news I was hoping for.  Not at all!  Suddenly I feel closer to my late parents, in a way I did not want and I know that they would not want for me.  So this is what it’s like to be told you have cancer.  This must be what it was like for that lady whose article I had only half read in the waiting room.  Heavy!

These thoughts went through my mind in an instant and now Colette and I were holding hands as Prof. FitzPatrick continues.  He and his team have a plan for me.  I will need a bone scan and an MRI to ascertain whether the cancer has spread.

Actually the words he used were “your cancer” – the three most chilling syllables I have ever heard in my life.  “My cancer”.  Boy, that sure makes it real, doesn’t it!

Anyway, after the scans are done, he’s going to remove my prostate gland and keep the option of radiotherapy in reserve.  He called radio a trump card and as such you don’t play it first.  Hopefully, ‘my’ cancer is confined to the prostate and surgery will have the desired effect.  If not, then radiotherapy will kick in.

The dates for the bone scan, MRI and surgery have yet to be confirmed so it’s a waiting game for now.  I have to wait a few weeks for my prostate to fully recover from the biopsy (which took 12 samples – I’m surprised there’s any of it left!).  It will still be bruised and swollen from the biopsy so scans would be inconclusive and surgery counter-productive at this stage.

There was a lot of other stuff about the effects of having my prostate removed.  Lovely stuff about catheters and the possibility of urinary incontinence and/or erectile dysfunction.  All of this I actually wasn’t too bothered about.  I only want to live.  If the price to be paid for that is a wonky willie I’ll cheerfully pay it and leave a tip!

Talking about ‘your’ cancer gives you an instant and radical change of perspective and priorities.  It’s almost liberating in a way.  I hope I still feel that way about it six months from now or whenever I’m going to have to deal with it.

So, with all that news and a subsequent chat with the prostate nurse, Colette and I left the hospital armed with new pamphlets and phone numbers.  We emerged on to the North Circular Road and it was pissing rain.  Great!  :-(

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