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Thursday, December 11, 2014

Through Al's Eyes

More than three years since my diagnosis with the Big C, I am now in a position to address one question that I have often been asked but have, until now, struggled to answer.

The question relates to my husband, Alan, and what he may have been going through while I was swanning around in chemo wards, and garnering the kind of celebrity every cancer patient will recognise.

It's the kind of celebrity that comes when the world's attention seems to be focused on you - you, you, you! You're treated like the all-conquering hero!  The courageous soldier!  The quietly suffering martyr!

So of course, it's a difficult question to answer.   You mean there's someone else?!

The fact is that when many go through a cancer diagnosis, it's all too easy to become somewhat selfish.  It's easy to forget that there are more people involved in this story.

That while you may be unwell there's this other bastard who is picking up the pieces, compensating for your physical, emotional or mental absence.  Holding the fort.

And that is, of course, your partner or spouse.

So how does this co-star in this dismal narrative cope with it all?  What goes on in his or her mind?

Where Al was concerned, this was always going to be difficult to establish.  An Englishman,  not only does he go out in the midday sun, but he was born with a 'stiff upper lip'.  He's the kind of gentleman who who doesn't like to make a fuss.

In fact, for years, it would really infuriate me when, where certain issues were involved I'd be waving my little Sri Lankan arms and loudly pushing my opinion, and when I'd ask Al if he agreed with my views he'd just shrug and mutter, 'Maybe.'

I mean, seriously, this man so rarely complains.  No matter how disappointed or let down he is, in most cases, he'll find a way to say:  'It's okay'.  Nothing, it seems is that big a deal.

So how did this man cope when I was sick?   What the hell was going through his mind?

I don't know!  He just kept on doing his 'thing'!

But now, nearly three years and three months after learning my goose was to be finely sliced, gently sauteed in a chemo sauce, then slowly grilled to perfection with a dash of radiation, I finally know just what Al went through and how he felt.

Because, as fate would have it, I am now walking in Al's shoes.

Because... Al, himself, is now a cancer patient.

The news could not have been more poetically timed.  On the day our second son, Ben, graduated, I was excited and primed for freedom.   Freedom, freedom, freedom.  Freedom from the tedium of school lunches.  Freedom from the stress of coping with the recalcitrant teen's frequent detentions for hideous crimes such as repeatedly being 5 minutes late to school.  No more school stress, hooray!

But that afternoon, the Universe it seems had different plans when Al returned home from a visit to the doctor's and announced:  'I have bladder cancer'.

I know.   You're thinking what I'm thinking.  'Bladdy hell!'

But while this cancer is different from mine, there are many things about Al's story so far that are not that dissimilar.

Like me, he has for some time appeared to me to lack, somewhat, in stamina and signs of fatigue should have provided an early warning.

Like me, he's been quite lackluster. He's looked pale in photographs.  He just hasn't seemed to have his old mojo.

Like me, there's been some obvious symptoms that have had him return for testing to specialists -at least twice over the past four years, in fact.  Actually, I do believe he was not exactly tickety-boo when was going through the thick of things.

An ultrasound, followed by a CT scan finally confirmed the diagnosis and within days Al  was off to see a urologist.

Like me, the speed at which things have moved is familiar.  My poor husband was despatched overnight to the Mater Hospital for a rather painful procedure.  Eyewatering, in fact.

Following the operation, again, like me, we endured that hideous period of nailbiting not-knowing as results are sent away and confirmed.

The urologist had told us that bladder cancer takes two forms.  One is basically a nuisance requiring frequent follow ups (as recurrence is common).  The second, well, it's pretty bloody bad, potentially resulting in an artificial bladder and other ghastly things.

What would it be?

On Tuesday this week we found out.  The cancer is a low grade one.  Hooray!

As a result, I now know exactly how Al felt when I was sick.

The days around diagnosis are tense and fraught with wild imaginings - in my case, of early widowhood.

One is wracked by concern for one's formerly strong and robust spouse who is suddenly reduced to someone fragile and transient.   All of a sudden, it has been me jumping up in the mornings to offer the man tea and breakfast.

I have started to treat him more tenderly, this diagnosis suddenly really bringing it home to me how much I have come to rely on him being in his space so I can be comfortably in mine.  I just can't imagine life without him.

The thing is, already, I see how easily we take the ones we love for granted.  You just think, don't you, that they'll be there forever?

I have, thus, had to very quickly come to terms with the idea, at least, of a massive reinvention - of hopes and dreams and aspirations - of everything.

In between, perhaps inevitably, there has been crying, saddening at the stress on Al's mum, Ethel, and at the idea that my boys may be orphaned too early if both of us cark it.

And of course, there has been praying, dusting off my rosary beads and pleading of the Good Lord to show us some of his famous Mercy.  (I'm sure He's rolling his eyes and groaning:  'Not you again!)

Meanwhile, for our close friends and relatives too, history has been repeated.  My Mum has dusted off her 'never-fail' novena and is, as I write, still madly praying.

I was secretly deeply moved when Al's friends, Andre and Trevor offered to look after some of his chores.  Trev offered to organise a working bee.  Andre offered to check in on his Mum.

I seem to be reliving my story... and you won't believe it.  This time, once again, my Aunty Ethel is visiting from Sri Lanka!

So you can see why, from all of this so far, one thing has been brought home to me.

The efforts I have made in sharing my story have been worth it all - worth the hard work and humiliation, worth all the empty rooms and poor books sales, and that one cheapskate who wanted a free book.

Because guess whose words I have been relying on even this early in the tale.  That's right.  My own!

So far, Al's story has really brought home to me how the advice and perspectives I've been sharing really are quite valuable.

As a result, already there are so many elements of my story that are common to everyone that Bronwyn Hope's words have been bloody useful to, well, Bronwyn Hope.  Who knew?!

For example, thanks to her, I recognise the universal human experience in how we share and experience illness.  Everyone finds it hard to know who to tell when a loved one is sick; everyone finds it difficult to have to repeat chapter and verse when explaining a medical scenario.   Jeez, this blog has been handy!

Thanks to her, I know that we should tell ourselves the right story.  Why catastrophise unnecessarily? Who know what the future holds?  Let's not make it any worse than it needs to be.

I know that we should ask for and accept help when it's offered.  So if the guys want to organise a working bee, he should not forget to take them up on the offer.

I know that life carries on around us while these big events occur and it's important to continue with one's usual rituals, as normally as possible.  Our cancer stories don't define us.  They should not override all the other blessed, beautiful things that go with the simple act of breathing.

There is so much I know because of my story.

And now there is something else to know.

I know how all of it looked through Al's eyes.