15
November

RESULT!

11/11/11 – is a date that will long be remembered in the Molloy household.  While Michael D. Higgins was being inaugurated the ninth President of Ireland, I would be getting the post-op pathology results and having my catheter removed.  The pathology results were first and the news was good – the surgery got all of the cancer.  Welcome news indeed!  Inasmuch as I can be after a cancer diagnosis, I am in the clear!

Of course, once you have been diagnosed with cancer you can never be completely out of the woods.  There will always be a risk that cancer will rear its ugly head again in the future.  It’s something I will just have to live with – this is as good as it gets.  Considering I had at one point been resigned to dying in the not-too-distant future, the result is pretty damn good!  I will have to return to the Rapid Access Prostate Clinic in the Mater Hotel every three months initially for check-ups, basically monitoring of my PSA levels.  All going well, the frequency of the checkups will reduce to 6-months then annually.

Following all this good news, the next order of business was removal of the catheter.  I had been looking forward to this since Cathy was installed during the surgery.  However, it was not as straightforward as expected.  Normally, removing a catheter is quite simple.  The business end is held in place in the bladder by a balloon filled with water.  The water is removed by means of a valve outside the body and the catheter slides out.  That’s the theory.

In my case, which was rare, the catheter would not budge.  It was perplexing so I was sent for an x-ray and an ultrasound to see if the balloon really was deflated or whether an obstruction could be identified.  The balloon was deflated all right but it was not clear what was preventing the catheters removal.  This was disheartening.  Cathy could not be forced out because, quite apart from the intense pain, there would be a risk of damaging where the two ends of my urethra were joined together, where my prostate gland used to be.

Later in the day, I had been walking around a bit with the balloon deflated.  So another attempt was made to remove the catheter.  By now the tip was outside my bladder and somewhere in my urethra.  The trouble was, it would not go back into my bladder – it was stuck!  While unusual, this situation was not unheard of.  If I went home for the weekend as I was then, with a bit of luck, the catheter might work its own way out of my urethra and penis.  If not, I would have to go to theatre next week to have it removed under anaesthetic.

By now I was very sore and found every movement extremely uncomfortable.  The journey home was littered with speed ramps and potholes to maximise my discomfort, despite TLC’s best efforts to find the least winding and bumpy route.  On getting home, the good news from the pathology results was overshadowed by the prospect of another few days with Cathy and another night in hospital.  I was feeling quite dejected.

I went into the bathroom and closed the door behind me.  I was going to examine this for myself.  Very gingerly, I took hold of the catheter and applied gentle outward pressure.  It came out of my penis, by about half an inch, without too much difficulty.  So I tried another half inch.  It gave way all right but this time it was painful. Crucially, though, I could not discern any increased resistance to Cathys outward passage.  Assuming there was no physical obstruction to the catheter coming out, it could be removed but it would hurt.  The challenge would be to maintain focus on the amount of resistance to the catheters removal while not being distracted from this by pain.  If resistance increased it would indicate a physical obstruction, necessitating a mission abort to avoid doing damage.  This meant I would need to stop pulling immediately if resistance increased which, in turn, meant I’d have to pull the catheter out slowly.

The decision was made. I gritted my teeth and braced myself.  There was about five inches of catheter to remove so without wasting any more time thinking about it, I got on with what had to be done.  It hurt like hell but the desire to get Cathy out without tearing my urethra to pieces prevailed over the pain.  My focus was entirely on how smoothly the catheter emerged from my penis.  Through a kind of out-of-body screaming, I could feel Cathy scraping the inside of my urethra but not hitting any obstacles.  Just as I was beginning to wonder if I was doing the sensible thing, the end of the catheter dropped out of my penis and I threw it into the sink with a vengeance.  Success!

That was one of the hardest things I have ever done but having it behind me now felt great.  I was thoroughly fed up with Cathy and did not want to spend another minute with a bag of piss strapped to my leg.  I would not recommend this approach to anyone else as it is risky and it could have ended in tears.  But in the interest of getting rid of Cathy once and for all, I decided it was worth accepting the risk and the pain.

Within the hour, I had my first normal pee in over two weeks and it felt good!  Well, it felt more strange really but that was to be expected after what my body had been through.  Surprisingly, there was no blood – just some stinging and a slight ache.

That was not the end of the good news though!  I had left the hospital armed with a two-week supply of urinary incontinence pads.  I wore them for the first two days but it quickly became apparent that I do not need them.  I cannot believe my luck – no urinary incontinence!  Well, I still leak a drop or two if I try to force a larger than usual fart.  But that’s nothing.  The main thing is, I don’t need to wear pads.  The usual suspects of coughing, sneezing or standing from a seated position do not present any problems at all for me.  I will still do the pelvic floor exercises as that muscle will still have to do more than it is used to, since I lost a sphincter muscle in the surgery and don’t plan to stop farting.  Incontinence was the post-op side effect I was least looking forward to dealing with.  That it is not apparently going to be an issue is a most unexpected bonus and yet more to be grateful for.

Another thing I left the hospital armed with was a prescription for Viagra.  This is, alas, a necessity.  Suffice to say, I do indeed have erectile dysfunction as a side-effect of the surgery.  It is treatable though and, I hope, temporary. I am to take 25mg of Viagra each day for six days and, rather biblically, “on the seventh day” I take 100mg.  All going well, that will enable me to have an erection.  This is not just for the purpose of l’amour though.  The Viagra regime is necessary to increase blood flow to the penis, to prevent scar tissue building up which would eventually make it impossible to achieve an erection.

All things being equal, if I had to choose between being stuck with urinary incontinence or erectile dysfunction, I would have chosen the deal I have now.  So overall I am very pleased with the outcome of my treatment to date.

It behoves me at this point to express my eternal gratitude to the medical and nursing staff in The Mater Hospital, the Irish Cancer Society, the ARC cancer support centre in Eccles Street and, of course, my family and friends (old and new) for all their wonderful support.

With a successful result to the treatment (notwithstanding the ongoing ED issue) it is time now to move on and rebuild my life.  Between sick leave and burning up my annual leave entitlement for the year, I do not expect to be back to work until the NewYear. I will need that time to fully recover.  I am still quite sore and I tire very easily.  There is also the matter of how I spend the rest of my days.  Having stared into the abyss at a relatively tender age, I do not see a resumption of ‘business as usual’ in January as a viable option.  Exactly what form the changes take I do not know yet.  But there will be changes.

Me and my moThe day after I was discharged from hospital was the first of Movember, when men around the world grow moustaches to raise awareness of prostate cancer and to raise funds for it’s treatment and research.  I am, of course, taking part and if you would like to show your support you can do so at http://mobro.co/TomMolloy.

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10
November

Last Day With Cathy

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!

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4
November

Only When I Laugh, Cough, Sneeze

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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2
November

Going Home

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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