Tag: prostate cancer


Last Day With Cathy

10
November

I had my first experience of urinary incontinence last night.  It came not from coughing, sneezing or standing up as the literature would have you expect.  For me, it came from farting.  Twice!  I had noticed over the past few days, a small dribble of urine from where Cathy (the catheter) enters my penis, when I had a bowel movement.  At first it was exceedingly uncomfortable but at least it was confined to times of defecation.  Over the days the discomfort of this slight dribble diminished but now, it seems, it is no longer confined to the throne.

This is the start of it – urinary incontinence.  Cathy probably held it at bay to some extent but today is my last day of wearing a catheter, thankfully.  It has been a very long two weeks since my radical prostactomy.  The pain, discomfort and diminished mobility have all been tough going, though improving slightly each day.  Wearing a catheter is a damn nuisance and somewhat demeaning, especially at night when you have to hook up a second bag to take the 1.5 to 2 litres passed during sleep.

Cathy is a necessary evil, however, to allow the urethra time to heal from the surgery.  The urethra is a tube that carries urine from the bladder to the genitalia and outside the body. It passes right through the middle of the prostate gland.  A bit of a design flaw there, methinks!  When the prostate is to be removed, the urethra has to be cut on either side of it and the ends joined together.  Obviously, if urine continues to flow over the wound it would not heal.  Hence the need for a plastic tube to temporarily take its place, inside the urethra.  So urinary incontinence is not, in my case, a product of prostate cancer per se but a side-effect of the treatment.

The good news is Cathy goes tomorrow and I will be able to pee normally again.  Hooray!  I will also be able to resume the pelvic floor exercises, which had to stop while I’ve been wearing Cathy.  I’m going to need them too, now that incontinence is a reality.  One person who will not be too put out by my incontinence is TLC, who no doubt will derive some satisfaction if pissing myself is to be the penalty for farting.  It is TLC’s silver lining and I don’t begrudge her.  I’ve had the joy of morphine and tramadol so now TLC gets to enjoy some peace and quite and clean air.

I am still quite sore from the surgery, though it is getting gradually better.  I can get in and out of bed more easily now than two weeks ago.  Mornings are the worst part of the day because the medication has worn off during the night.  So I have the unpleasant routine of emptying Cathy and disconnecting the overnight bag before I go downstairs and take my meds.  That’s the first order of business every day.  I was never one to pop pills for every little complaint, trusting my body to repair itself when necessary.  But even I must concede that pharmaceuticals are necessary at times like this.  I have quite the little array of tablets to take in my morning routine.

One of them is an antibiotic I started on this week, due to a suspected bladder infection.  On going to my GP, a urine test showed up a lot of white blood cells, confirming what I had thought.  For several days I had the increasingly persistent feeling that I needed to pee.  Despite Cathy taking care of that for me, the sensation kept getting worse.  It was like when you stop urinating mid-stream and try to hold it.  Well, that’s what it was like for me all the time.  It was horrible, with no prospect of relief.  Thankfully, though, the antibiotic sorted this out within a day and it has been much more tolerable.

Cathy’s removal will mean resumption of the pelvic floor exercises I had just started a week or so before surgery.  I got more information about these exercises from a physiotherapist at the prostate cancer conference I attended at the weekend.  For one thing, they don’t involve any lying on the floor – ‘pelvic floor’ is the name of the muscle itself.  Everybody has it and it’s like a sheet of muscle across the bottom (or “floor”) of the pelvic region.  What this muscle does is basically supplement the sphincter muscles that were on either side of my prostate gland.  I lost one of those in the surgery so the pelvic floor muscle needs to be trained to take up the slack.  My relatively young age should be in my favour as I train my pelvic floor muscle to take over the duties of a sphincter.  With time and training, hopefully it will become second nature and I will have no issue with incontinence after a few months.

Losing Cathy is a major milestone in my treatment and recovery.  It marks the healing of my urethra and near resumption of normal urinary service.  It also marks the beginning of the serious work of rehabilitation.  My daily walks have been hindered to a large extent by Cathy, so they will be longer and more vigorous.  As the 4” wound on my abdomen heals, I will soon be able to resume weekly yoga classes in the ARC cancer support centre in Eccles Street.  In the meantime, the pelvic floor exercises I had described as “tedious” before the surgery are now anything but, since the reality of urinary incontinence has begun to kick in.  Motivation will not be a problem there!

1 comment » | Cancer

Only When I Laugh, Cough, Sneeze

4
November

It’s a week since my radical prostactomy, my fourth day at home and I have settled into a routine of sorts.  What occupies my mind most is pain.  Ironically, it is not so much pain from the surgery as that from a different operation, over four decades ago.

When I was one or two years old I had surgery for a hernia.  I have no recollection of it, just a long scar on my abdomen, to the left of my brand spanking new scar.  My abdomen is still swollen following my prostatectomy but it is very lop-sided, with most swelling on the right.  It seems that 42-year-old scar tissue is not as flexible as ordinary skin and muscle.  There is a pronounced dimple along half the length of the old scar, where tissue is being pulled and stretched, resisting the swelling and causing considerable pain as a result.  If it were not for this, I would actually be relatively comfortable.  It’s just my luck that something which never bothered me before flares up now!  Hopefully, when all the swelling has gone this issue will go with it.  But I have an awful dread of needing further abdominal surgery at a later date.

Pain in around the prostactomy wound is worst when I laugh, cough or sneeze.  The pain hits me in the whole abdominal area on these events but sneezing the worst.  I feel a strange sensation like a burst of heat within the wound when this happens.  It only lasts a second or two but the stinging pain in the old scar area continues for several minutes afterwards.  I have become adept as suppressing sneezes but if there’s one in there it has to come out sooner or later.  The knowledge of this and the anticipation of it is terrible.  I like to think I have a pretty high pain threshold, making a distinction between pain and tolerable discomfort.  This is definitely pain and it knocks me for six every time.  If this is what a caesarean section feels like, I have a renewed respect for TLC and other women who’ve had sections.  It is no joke, I can tell you!

Coughing causes the pain as well but it’s not as severe and I’m getting used to controlling it.  The first thing to cause coughs are phlegm in the lungs.  I’m like a cat bringing up a furball now, coaxing it out gently instead of ejecting it decisively.  I’m sure it’s not a pretty sight or sound and it must be testing TLC’s patience.  It still hurts but not as much.  The second cause of coughing is something hitting the back of my throat.  This is as bad as sneezing and is caused by the most innocuous things like eating toast!  Yesterday, I must have been inhaling as I raised a slice of toast to my mouth and a crumb came off it and hit me where it hurts, causing an involuntary cough I wasn’t ready for.  I nearly went through the roof!

Laughing causes pain too but it’s the kind of pain you don’t mind so much.  It’s like trying to suppress a laugh at a funeral and is all the more enjoyable for it, in a perverse way.

Thinking about it now, I’m attending a national prostate cancer seminar tomorrow and the first workshop I’m registered for is ‘Laughter Therapy’.  Maybe that wasn’t such a wise choice, nine days following major surgery.  What the hell!  It’s the one I wanted to go to so I will.  The full day seminar will be my first big excursion from the house since leaving hospital and I’m a little apprehensive about it.  Taking my meds on time and getting to drain Cathy (my new name for my catheter) will play on my mind somewhat I expect.  But I’m sure there will be many like me there, though probably not as soon after surgery.

On my second day home from hospital this week, I received a letter.  It was from the hospital, informing me I have an appointment with a consultant breast surgeon! This was either an admin error or someone was taking the piss!  On phoning the breast clinic, it transpires I do indeed have an appointment for a breast check, of all things.  Apparently, men can get breast cancer as well.  This was news to me and what a way to learn it!  Wouldn’t that just be the cherry on the fucking cake, if it turned out I had breast cancer!

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Going Home

2
November

In my last hour in The Mater Hospital, I had a bit of time to kill before TLC would arrive to bring me home.  So I went for a stroll through the hospital corridors, for much needed, post-op exercise.  I paused at a window overlooking Berkeley Road and saw runners in the Dublin City Marathon passing by, many of them clearly running to raise funds for cancer charities.  This had a sudden and entirely unexpected effect on me as a multitude of feelings came flooding to the front of my mind.  These were feelings I subconsciously felt the need to put on hold while I dealt with the business end of having cancer.

I knew that many of the people running the marathon for cancer charities were doing so because they had recovered from cancer themselves or had lost loved ones to the disease.  They were people like me, who had lost both my parents and came very close to falling victim to cancer myself.

It was only through sheer luck that I was diagnosed when I was.  My combined PSA and Gleason scores were bad, initially indicating I might not survive.  But the long anticipated MRI and bone scans results showed that – against the odds – my cancer had not spread beyond the prostate gland.  Prior to getting those results, I was mentally bracing myself to be told I was going to die from this.  But I had major surgery ahead of me so I still could not unwind.

Now, packed and ready to go home after the surgery, I stood at the window watching people running a marathon on behalf of people like my late parents and me.  For the first time since D-Day, overcome with emotion, I cried.

That window, overlooking the corner of Eccles Street and Berkeley Road, represents to me a turning point in my life from where nothing can ever be the same again.  I am going to die.  That is an absolute certainty.  What is unknown is how or when.  Every minute between now and then is a gift not to be squandered.

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Is that a bag of piss in your pants or are you just pleased to see me?

30
October

Well, the deed has been done and I am now sans prostate.  The last thing I remember before surgery was the anaesthetic being administered at 1pm and thinking about my late parents.  It was upsetting to think of my mother and father dying from cancer as I was about to be operated on for the same disease.  So I had to make a conscious effort to not think about my parents at the most vulnerable time of my life.  That was hard.

When the welcome oblivion of general anaesthetic lifted, I noticed the time: 10pm.  I was initially troubled about the length of time I was out – it should not have been nine hours.  Apparently there was some issue with my pain management: I vaguely remember regaining consciousness briefly and being in some distress in the recovery room but quickly going back under again.  When I came to at 10pm I felt no pain but I was disorientated.

I had always imagined that coming out of a general anaesthetic must be very disorienting and I was right.  Losing several hours is disconcerting, not that I would want to have gone through them.  After spending a couple of hours under observation in the recovery room, I was brought back to the ward, where I had the best nights sleep in weeks!

On waking the next morning, I was pleased to find I had a patient controlled analgesia attached to my arm – the means by which I would treat myself to frequent doses of morphine for the next day and a half. I had heard great things about morphine and was not disappointed.  As well as being an effective painkiller, it gives you a pleasant ‘high’ – the silver lining of major surgery!

The next thing to check was my abdomen and, of course, Horace.  Poor Horace!   The catheter was in place as expected.  What I was not ready for was the sight of a 6mm diameter tube sticking out of his one eye!  It looked awful and Horace was horribly bruised and swollen.  Surprisingly, though, the catheter did not feel as intrusive as I had expected (probably due to the painkillers).

The day following surgery was okay, thanks mainly to my new best friend: morphine.  Getting in or out of bed demanded herculean effort but apart from that there was no pain.  I mostly spent the day stoned and drifting in and out of sleep.  The medical team was around early and Dr. Galvin told me the surgery had gone well.  He managed to remove all that he needed to while leaving nerve endings to the right of my prostate largely intact.  It is these nerves I will rely on to achieve an erection, eventually.  I needed a lot of pain medication during surgery so that accounted for my feeling so out of it now.  Dr. Galvin said I would be coming off the intravenous morphine the next day and switching to an oral version.  Apparently the good stuff can cause constipation and the next signs of recovery the team will be looking for are farting and shitting!

Grace was to come in to the hospital to see me the next day so I was happy enough to abandon my NBF in the interest of having a clear head for my daughter’s visit.  I was a little worried that she may be freaked out by seeing me laid up, with tubes sticking out of me and me carrying a bag of my piss around like a macabre handbag.  As always, though, Grace was cool about everything.  There is an old head on her 6-year-old shoulders and she seemed barely even curious about my condition, thankfully.

I started walking around the hospital more, on Dr. Galvin’s advice.  I’m a bit shaky on my feet and get weak and dizzy easily.  So trips are kept short and close to the hand rails that are everywhere in hospitals. I’m also to drink as much water as I can, to flush out the system.  Luckily, I can drink quite a bit so the nurses are kept busy emptying my catheter.  I have to say, I really do not like wearing one!  While it wasn’t particularly uncomfortable at first, it is starting to get so now and I am counting the days to Friday 10th November, when I get it removed.

I said it before and I’ll say it again – you’d be amazed what you can be grateful for.  Even something as routine as taking a piss is a thing of great beauty when you can’t do it!

What seems most unfair about a catheter is, contrary to what I expected, I still fee the need to ‘go’ all the time, even though the urine is constantly draining out of me.  I can spend the day watching my bloody urine filling a bag but I don’t get the sensation of relief from having a normal slash.  At one point, I tried applying a little pressure, to see if I had any control at all.  It hurt like hell so I won’t be trying that again in a hurry!

Another inconvenience of the catheter is the tube gets airlocked.  So I have to keep lifting it up to allow the urine to drain.  A few times, the flow went the wrong way – a very unpleasant sensation!  The catheter I go home with will be different and designed to be mobile.  So hopefully I can have a relatively normal life while I have it.  I don’t think the other diners would thank me for sorting out my airlocks in the restaurant!

Overall, despite considerable discomfort, my sojourn in The Mater is pretty good.  It is a relief to have the first phase of my treatment behind me.  The recovery is next and I’m looking forward to it.

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Under the Knife

26
October

My radical prostactomy looms as the countdown transitions from days to hours.  I am being admitted to the Mater Hospital at 2pm today, with the surgery to take place about the same time tomorrow.

I still feel very fortunate that I was diagnosed at all.  Were it not for my high blood pressure, I would still have cancer anyway.  However, I would not have been be aware of it and it would still be growing – and probably spreading – inside my body.  This would have had the attendant impact on my chances of survival.  So, all things considered, I am a very lucky man indeed, especially given my family history of cancer.

To any man reading this I say: Get Yourself Checked Out!  I was only 43 when the bombshell dropped.  Since then, I have heard of men as young as 33 being diagnosed with prostate cancer.  The perception that you have to be over 50 before you start thinking about the threat of prostate cancer is a mistaken one.  You have nothing to lose by going to your GP for a blood test and you have everything to gain.  This applies to women too.  You won’t get prostate cancer, obviously.  But cancer can start in any organ of your body, at any age, and it is utterly indiscriminate.

I was lucky to have a good GP who ticked the PSA box in a routine blood test.  But luck is not something to be taken for granted.  So get it checked out: you owe it to yourself and to your family, not least your children.

On D-Day, when Prof. FitzPatrick broke the news, my attitude was that I only wanted to live and the side effects of treatment – urinary incontinence and erective dysfunction – would be trivial in comparison.  At the time, I said I would “cheerfully” accept them. While still grateful for a second chance, I’m not sure that I can say I’m still “cheerful” about the side effects.  Resigned or stoical would be more accurate.  Perhaps this is a product of complacency, from learning that my cancer has not apparently spread beyond my prostate gland.

Among the preparations I have had to make for surgery and its aftermath are pelvic floor exercises, to strengthen the muscles pertaining to urinary functions. They mostly involve clenching muscles in the pelvic region and are pretty tedious.  I was never one for exercises, as a small fortune in wasted gym membership fees over the years will testify.  But the emphasis put on them by the medical team and prostate cancer patients I have spoken to makes me think it is actually about more than just going through the motions.

At my yoga session in the ARC Cancer Support Centre on Monday, one of the guys in particular told me how much yoga and the exercises have helped him to recover.  A year after the surgery, he is making good progress, largely thanks to these exercises.  So I am now faced with an inconvenient truth: that physical exercise and real effort reap benefits that I will have to work at to realise. Feck!

One of the main benefits of ARC is meeting other patients.  I am definitely the ‘baby’ of the class and I almost feel like a pretender as a result.  But in conversation with two of the lads, before hitting the mats, one thing that was said, which I hadn’t appreciated before, was that the younger you are, the more aggressive your cancer is likely to be.  Oddly enough, this made me feel better (now that I have my favourable MRI and bone scan results under my belt), enhancing my right to be a member of this exclusive club, so to speak.

At the end of the yoga class, the guys were fantastic, wishing me luck with my surgery and giving me phone numbers to ring for moral support.  There is a sense of community among cancer patients that is beyond compare.  The support from the medical professionals, the Irish Cancer Society and ARC is excellent.  But it is your fellow patients – the people who have gone or are going through what you are – that means the most.  These are the guys who have stared the prospect of imminent death in the face, pulled through and gone on to live life with renewed vigour.

There is an observation that I am bound to make at this juncture of my experience.  In Ireland, we are regularly told about crisis in the health service.  While there are undoubtedly issues, I have to say that my experience so far has been entirely a positive one.  Having been diagnosed on 16th September, I am having curative surgery six weeks later.  That’s not bad, considering a necessary wait between biopsy and MRI/bone scans.

This makes me wonder what I paid VHI for in the years before I quit about six months ago, due to the unsustainable rising cost of private health insurance.  I would not have been seen or treated any sooner had I had VHI cover.  In some countries I would be turned away if I didn’t have private insurance.  So, with all the problems we have in Ireland, including the health service itself, it is reassuring to realise that there actually are some things that do work in spite of all the bad press.

My main point-of-contact with the HSE is my prostate nurse, Mary.  She has been absolutely fantastic.  Talking to anyone – never mind a woman – about urinary incontinence and erectile dysfunction is difficult.  But Mary has a professionalism and sensitivity that makes it easier.  In fact, she was way ahead of the curve than I was, foreseeing the emotional issues I’m only beginning to come to terms with now.  I was blasé about ED in particular, in the beginning.  But Mary, due to her training and experience, was good enough to know that the impact at my relatively tender age would be yet to hit me.  The cavalier attitude I have admittedly had up to now is ebbing somewhat.  The good news is that my prospects of a full recovery are good, though it will probably take months rather than weeks.

Mary assured me that the plan is to:

  1. Cure the cancer
  2. Get me “dry”
  3. Recover my “erectile function”

I am all for this order of priorities so no problem there.  The difficulty I have is that I am only now beginning to realise that the issues of urinary incontinence and ED are going to affect me more than I had at first chosen to believe.  It is not that TLC and I have a particularly rampant sex live.  It is probably average, at best.   But even going from average to zero is disappointing.  So there is a body of work ahead of me over the next several months (image of Sylvester Stallone in training as Rocky Balboa, complete with background music!).

The 24 hours between admission and going to surgery will be long.  I was given the option of a sedative at my pre-operative assessment yesterday but I declined.  I reckon I’m going to have enough pharmaceuticals in my blood as it is and a bit of anxiety won’t kill me.  I have plenty of reading material to keep me occupied and if I don’t sleep, it might zonk me out for longer during the day when I will need it more.

I hope to duck out of the hospital in the morning to vote in the presidential election and get back in time for surgery.  Hopefully I will be sufficiently recovered on Friday to follow the results online.  Election counts are my Cheltenham (sad, I know) so I’d be disappointed if I don’t get to watch the results coming in for my preferred candidate.  Thank God for the single transferrable vote – you can’t buy entertainment like that!

Anyway, it’s time to sign off and go under the knife.  Wish me luck!

11 comments » | Cancer

Lucky, Lucky Bastard

14
October

It really is amazing what you can be grateful for, when you have the right perspective.  I was diagnosed with prostate cancer four weeks ago today.  But the disease has not spread beyond the gland itself.  That’s the wonderful news I got this morning, after four long, anguished weeks of waiting.  And gloriously grateful am I to receive it!

With a PSA level of 9.5 and a high Gleason score of 9, I had pretty much convinced myself that my cancer was bound to have spread throughout my body, with the attendant impact on my chances of recovery.

The nurses had given me an unofficial heads up that the MRI and bone scan results looked good.  But the results had yet to be reviewed by the medical team and there was always the risk that they would spot something untoward.

This morning my mind was put at ease in the Rapid Access Prostate Clinic.  If I won the Lottery it couldn’t top the feeling I have now and my prospect for a full recovery is now far better than I dared hope when I was diagnosed four weeks ago.

Of course, once you are diagnosed with cancer, you are never completely out of the woods and there is always a chance that it could rear its ugly head elsewhere in my body, at any time in the future.  But I could also be hit by a bus before that happens.  So life goes on regardless and the spring in my step that eluded me on D-Day has finally materialised.  In a peculiar way, being diagnosed with cancer has given me a new lease of life.

I also, finally, have a date for the surgery to remove my cancerous prostate gland (and a few other bits and pieces) – I go under the knife on Thursday 27th October.  The tumour in my prostate measures 1cm x 1.9cm.  Given that a prostate gland is about the size of a walnut, that seems quite large, not that it will bother me after the 27th.  While the surgeon is in there, he’s going to remove lymph nodes in the pelvic area, as there is a chance that cancer can spread to these.  So the surgeon’s instructions on the day will be “if in doubt, whip it out”!

Apparently, the consequences of losing my prostate gland may not be as severe or as long lasting as I had feared.  I will certainly have to cope with some urinary incontinence and erectile dysfunction following surgery.  But the extent of these side effects varies greatly from one patient to another.  I could be back to my old self within weeks or it could take a year or more.  There is no way of knowing at this point.

Urinary incontinence may not be quite as bad as I’d feared.  I had thought I would have no control whatsoever, pissing myself all the time – not cool!  However it is, apparently, likely to be only when there is pressure on the bladder, such as when standing up from a seated position or bending over, stuff like that.  The silver lining is that it gets me out of many of the household chores I hate.

Urinary control is based on two sphincter muscles: one behind the prostate and one in front.  I will lose the rear one in the surgery but it’s the front sphincter that matters most.  I can prepare for this over the next couple of weeks by stopping a slash in mid-stream.  It’s not the most edifying of exercises but hardly the most arduous either.  So I can live with it (“live” being the operative word).

I’ll be wearing a catheter for two or three weeks after surgery and it is when this is removed that I’ll know what I have to deal with.  I’ll be wearing ‘pads’ (an awful word) to soak up the (hopefully) odd dribble for a while.  I have only discussed this with one other prostate cancer patient so far and he was still having problems since his surgery in January.  I’ll be talking to many more before my date with the scalpel.  So hopefully I’ll learn of others who have had a better experience.  Either way, it’s inconvenient but not the end of the world, all things considered.

Of course, the second major side effect of radical prostatectomy is erectile dysfunction (ED).  Similarly, this may not be as long lasting as I’d first feared.  There is no real pattern in the experiences of previous patients.  So, again, it’s a case of ‘wait and see’ (the traditional ‘suck it and see’ seems hardly appropriate, under the circumstances).  The Lovely Colette (TLC) can be assured of undisturbed nights sleep for quite some time following the surgery.  It can take weeks, months or years before normal service is resumed, if at all.  There is hope though.

One option is to take a quarter of a Viagra tablet six out of seven days.  This does not mean I’ll be walking around with a stiffy all the time (sorry ladies!).  To achieve the desired state, a full tablet at the weekend should do the trick.

Funnily enough, it is important to achieve erections in the first year following surgery, if only chemically induced.  If this doesn’t happen, the tissues involved effectively form a kind of scar tissue that reduces the probability of being able to get it up naturally.

There is also the option of using an injection into the base of the penis, which would definitely perk Horace up (‘Horace’ is how TLC and I affectionately address my cock).  The thought of sticking a needle into Horace seems kind of cruel.  But if tough love is what he needs that’s what he’ll get – and he’ll bloody well like it!

Overall, today has been one of the best days of my life.  The cliché that “today is the first day of the rest of your life” takes on renewed meaning after you’ve been diagnosed with cancer.  So many clichés like “life’s too short” and “don’t sweat the small stuff” assume new meaning that you had previously taken for grated.

When you are faced with the cold, up close and personal prospect of imminent death you undergo a life-changing transformation that is utterly irreversible.  Having being diagnosed with a life-threatening condition is not necessarily the end.

Blessed as I am with the beautiful family, friends and colleagues I have, I now realise what a lucky lucky bastard I am!

10 comments » | Cancer

Radioactive Man & Birthday Boy

6
October

Radioactive Man & Birthday BoyI was never one to get overly excited about birthdays.  Since turning 40, in particular, each passing year was not something I relished celebrating.  That was before D-Day.  My 44th birthday yesterday was quite different to all the ones that preceded it.

Someone asked me what I wanted for my birthday.  I replied, joking (but not really), that all I wanted for my birthday is another birthday.  It seems strange to me now that I used to regard birthdays with mild annoyance.  It was as though their sole purpose was to reiterate how far removed I was from the full flush of youth, when health and optimism were in abundance.

It’s funny how it takes something like a diagnosis of cancer to shake you out of the drudgery of mundane, everyday routines and to understand your place in the universe.  I now value birthdays for what they really are – a celebration of another year of life – not a countdown to old age and death.  Indeed, it now seems to me that when we moan about getting old, we completely miss the point.  Old age is a gift, not to be taken for granted.  I used to joke that what I wanted to be ‘when I grow up’ is a dirty old man.  That is still my goal but it’s not so much a joke as it used to be.

In an effort to establish whether my cancer has spread and to what extent if it has, I had my bone scan today.  This is of paramount importance to me.  The initial diagnosis of prostate cancer is one thing but this and the MRI will quantify it, giving me a better indication of my chances of survival.  The scan itself was quite straightforward.  My appointment was for 08:30 and I was back out on Eccles Street at 08:42, so no problem with long waiting times there.  I was given an injection of radioactive material and this needed two hours to be absorbed by my bones.

There were no side-effects and I was free to leave the hospital for the couple of hours.  Breakfast called so I had a thoroughly unhealthy full Irish (cholesterol is the least of my concerns these days), followed by a visit to the Irish Cancer Society kiosk in the foyer of the hospital.  I picked up a few more booklets about radiotherapy, the emotional effects of cancer and talking to children about cancer.  The ICS nurse was very helpful and told me about a Prostate Cancer Conference in Croke Park on 5th November.  I will be attending that if I am not in hospital for surgery at the time.

Karma demands that if I get through this I must give something back.  So my plan for the conference is to learn as much as I can about the available supports for prostate cancer patients and their families, draw what I can for my own case and to find out how I can make my contribution later.  It is a pity that it takes a diagnosis of my own to get me off my arse and doing something proactive.  I have a new found respect and admiration for people who freely give of themselves for the benefit of others, in whatever cause.

Now that my bones were nice and radioactive, it was time to return to the Nuclear Medicine Department for the scan.  I have to say that I found it very efficiently run and I did not have to wait long before finding myself lying in the scanner.  It was not as intimidating as the MRI machine, being smaller, less confined and relatively silent.  The scan would take about twenty minutes, as the machine moved slowly from my head to my feet, seeking out concentrations of radioactivity in my bones, where it would indicate a presence of cancer cells.

Out of the corner of my eye, I could see my skeleton being progressively revealed on a computer monitor.  With my layman’s untrained eye, I strained to discern anything that looked like a hot spot.  Head, shoulders, rib cage – so far so good.  The abdominal area looked brighter than I would have expected and I could clearly see my kidneys.  As this was a bone scan, I was concerned about seeing my kidneys lit up like Christmas trees and I have recently been feeling some mild discomfort in the area.  I imagine that the kidneys could be ‘riddled’ and the thought of a potential regime of dialysis or waiting for a transplant is unsettling.  There isn’t anyone in the room with me at the time so it will be the first thing I ask about when the scan completes.

The staff who appeared were all very pleasant and my question about the prominence of my kidneys is answered.  It’s perfectly normal and nothing to worry about. The kidneys are supposed to show up like this and it is why I will have to drink as much fluid as I can over the next 24 hours, to flush out the radioactive material.  The nuke med staff were at pains to stress that they are not doctors nor trained to interpret the scan result – that is Prof. FitzPatrick’s job.  However, they see hundreds of these scans and as far as they could see, my bones look normal.

Oh Happy Day!  Medical professionals can be infuriatingly non-committal so it was encouraging to hear this opinion, albeit with a disclaimer.  There is a risk that the medical team who will officially analyse the scan may take a different view.  But after waiting this long for more details, I will grasp with both hands any lifeline that’s thrown my way.

I have been feeling ‘odd’ in my abdominal area recently and actually very worried indeed about what the scans may reveal.  There is a danger when you have a serious illness that you attribute undue significance to every little ache and pain.  With middle age now upon me, I have to remind myself to be circumspect and not jump to conclusions.  I am still awaiting with bated breath an appointment to meet Prof. FitzPatrick and discuss my treatment in greater detail.

In the meantime and for the rest of the day, I am to avoid pregnant women and young children because I will be emitting radiation to a radius of about two metres.  I have never been radioactive before and wonder if I will acquire superhero powers or whether my piss will glow in the dark.  Probably not.  I consider myself to have already received my share of good fortune today!

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Dial M for Magnetic Resonance Imaging

1
October

It’s now been two weeks since D-Day and there are still no outward signs of any symptoms of prostate cancer.  As welcome as this is in itself, it is a mixed blessing in a way.  Feeling physically normal makes it harder to truly accept that you have cancer.  Maybe there has been some mistake?  No. I was never one for clutching at straws and it is highly unlikely that both the PSA test and biopsy got it wrong.  If life has taught me anything, it is that knowing a thing and feeling it are two very different affairs.  So, I must accept the diagnosis and keep preparing for the worst, like hearing a tsunami warning and bracing yourself for the tribulations to come.

Having finally completed reading the Understanding Prostate Cancer booklet, I now have some figures to quantify the likelihood of post-surgery issues.  There is a 70% probability of urinary incontinence during the year following surgery, dropping to 10% thereafter.  The likelihood of erectile dysfunction (ED) is also 70%, dropping to a less encouraging 30% a year after surgery.

Urinary incontinence is pretty much something to be coped with but there are some well known drugs for treating ED, like Cialis and Viagra.  Another drug I hadn’t heard of before is Caverjet.  According to booklet, Caverjet is “injected into the penis using a small needle to cause an erection”.   I’ll have to take their word for that because I cannot conceive of any cause/effect relationship between ‘needle’ and ‘erection’!  On the other hand, the most memorable sentence in the whole booklet, also about Caverjet, is: “a prolonged erection longer than 3 hours needs urgent medical attention”.  Intriguing!  I dare say, if I had a stiffy like that, it’s the lovely Colette who would be in need of medical attention. Ha Ha!

At a yoga class for men with prostate cancer on Monday I met John, who had his radical prostatectomy in January.  He still has problems with his waterworks now and you can tell from his demeanour that he’s fed up with it.  But John is happy to have survived and talk among the men is mostly about check-ups and comparing notes about doctors and treatments.  I was by far the youngest there and felt a bit like an interloper, with my week-old diagnosis and yet to commence treatment.  But it is an exclusive club and I will be fully inducted soon enough.  There is a common misconception that prostate cancer only affects men over 50.  So I wondered if my presence made my senior fellow patients feel a little bit better, by reducing the average age profile.

Yoga is something I had not tried before and I did find it relaxing.  Being the new boy in the class meant I kept glancing around me to see what everybody else was doing.  Connie’s verbal instructions were clear enough but I’m a visual kind of person and tend to understand what I see better than what I hear.  I will keep going to the weekly class, not least for the sense of camaraderie and mutual support that only fellow cancer patients can provide.

The strain of the impending treatment and uncertainty about the outcome is starting to show in Colette.  My wife is being exceptionally nice to me and, as every married man knows, this is cause for concern!  Colette has not read as much as I have about prostate cancer, its treatment and their consequences, both inevitable and potential.  She needs more time to get her head around it all and she feels a need to await the MRI and bone scan results, to know exactly what we’re faced with.  I have tried to convince her to avail of supports from the Irish Cancer Society and the ARC cancer support centre in Eccles Street.  But everybody is different so I don’t push it, trusting that Colette will find the inner strength to deal with this in her own time and her own way.

Colette has told Grace that I will be spending some time in hospital soon, without going into detail.  At just six years of age, I don’t expect that this will mean very much to Grace.  She has not mentioned anything to me about it so I wonder how much she will understand.  At some stage, we are going to have to explain to Grace why I am ‘not myself’ and not going out to work.  But before we can do that, Colette and I need to understand more about that lies ahead ourselves.

The highlight of this week was having my MRI scan yesterday.  This and the bone scan are the great swords of Domacles hanging over my family.  Everything is on hold pending the results of these tests, which will establish whether and to what extent the cancer has spread.  At risk of being melodramatic, I see these tests as indicators of whether I am going die of this cancer or survive it.  Concerns about incontinence or ED pale into insignificance in comparison with a literal matter of life or death.

I had not had an MRI scan before and it was more or less what I expected.  On exchanging my clothes for a most unflattering gown, Frances went through the obligatory checklist to make sure I didn’t have any metal in or on my person and whether I suffered from claustrophobia.  The scan would take twenty minutes and there would be a lot of noise so I’d have headphones on with the radio station of my choice.  It was tuned to Lyric FM but, as much as I like classical music, the choice seemed a bit clichéd for the task at hand.  So I opted for Newstalk, which I would normally be listening to in the car on the way home from work about now.

All prepped and ready, Frances left me alone in the room and the sounds from the headphones changed from classical music to Newstalk.  At this point, it occurred to me that I was about to be scanned for signs of the spread of cancer throughout my body.  I would be unable to move for twenty minutes inside a giant magnet and I’d have George Hook in my ears.  Oh well, in for a penny in for a pound, there’s going to be far worse than this to contend with later.

The first thing that struck me on entering the MRI scanner was how much more confined was the space than I expected, the top of the chamber no more than a couple of inches from my face.  I imagined how much like being in a coffin it must be, without the cheap wood and frills.  Not the most comforting of thoughts when you’re being scanned for a spread of cancer through your body.  It also confirmed my wish to be cremated when the time comes. But, being something of a science fiction nerd, I also found it a curiously interesting experience, wondering how magnetism ‘sees’ inside the body and making a mental note to Google it later.  When the scan started, it was indeed very noisy and I was glad of the company of George Hook for twenty minutes.

When it was all over, Frances returned and had checked up to find out whether there was any progress on my bone scan.  I had mentioned earlier that I was still waiting for an appointment for one.  To my surprise, there is an appointment in the system, for next Thursday, and Frances surmised there is probably a letter in the post for me.  She gave me a number to ring on Monday to confirm it.  My appointment is with, of all things, the “Nuclear Medicine” department, much to the titillation of my inner nerd.  I mean, “nuclear” medicine – how cool is that!

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Fight Club

26
September

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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Day 4: Let the Games Begin

19
September

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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