Living with a melanoma

authenticity and integrity

Today I have thought about being authentic.  A situation such as the one we are facing has a great deal of scope for drama.  And therefore a stage on which I can play the drama queen.  We could play the SGC (Steve’s Got Cancer) card in so many places and in so many ways.  Most of the time we try not to – but it is tempting – but its not real, its not authentic.  I know that a well told story of love, surgery and wonderful doctors raises interest (why do you think Mills & Boon are so popular?), throw in a whiff of death and you have a tragedy on your hands.  You have bravery, honesty and passion (and hopefully a best seller) but is it authentic?   Am I telling the truth, am I being authentic or am I writing this just for effect?  

I started this blog as a way of telling a few friends about what is happening, a way of giving you all as much detail as we felt able to share.  I quickly realized that there is another, powerful reason for doing this – I love writing and this blog is such a great way to stop the chattering in my head, somehow the act of putting my thoughts on paper takes them out of the maelstrom of my mind and gives them order.  This blog gives my thoughts a voice.   So it has to be written with integrity and authenticity.  When we tell you how we feel it has to be the raw truth, not a sanitized version nor an overly dramatized tabloid sensation.   I have to be strong to write this but you need to be strong to read it.  

This is a love story and love is real and mundane as well as passionate.  For this to be authentic I need you to know that we still bitch at each other.  I haven’t stopped being irritated that Steve leaves his shoes in the middle of the kitchen and I just know that if I fold the newspaper into a crumpled heap he is still not impressed.  Lets be honest, death does not beatify.  There is a tendency to raise everyone who is dying or just dead into some holy position.  When did you ever read or hear that this ‘truly irritating and argumentative person has at long last died’?  No, its nearly always ‘he / she was so lovely, always smiling, never a bad work about anyone’.  We live daily in the clear knowledge that Steve may not draw his pension and we try hard to bring out the best in each other.  But neither of us is a saint nor are we going to be.  

Those of us who are old enough to remember the Aberfan disaster may recall the mother who sent her little boy to school crying because she had scolded him.  Ever mindful that none of us ever really knows if our loved one will return from work / shopping / a walk we do make every attempt to always part with a loving kiss.  But this is real life and real life goes on.

coffin shoppin’

There are a number of ways to spend an afternoon but we challenge you to top this – today we have met with our Financial Advisers and tried to work out how to make sure we have enough money to live on and then we have been to the funeral directors.  Andrew, yes first name terms with the wonderful owner of Cambridge Funeral Directors, was his usual calm self.  Andrew taught me when I was a lay minister and took the funerals of both my parents.  Rarely have I met someone who can express so much compassion and remain so upbeat and positive.  He has helped us through the whole awful planning of a funeral that we thought we would never consider together.  Of course, we know we all have to die – but I thought I would be long gone before Steve.  To be honest, I reckon I have got a raw deal, here I am, married to a man 20 years younger than me whose odds on living longer than me are slim!  However, plan we did, Why?  Because its one less thing to have to keep considering – one less thing to have to keep wondering ‘is now the right time?’  Planning your funeral does not cause death, its not morbid and its not dark – its just ticking the box, And if you are wondering – the coffin is going to be blue – we get to chose – all we had to do was pop to B&Q for a colour chart (any Dulux colour is fine) and as luck would have it Andrew was there too, so he knows we have got it sorted!

 

out damn spot

Today they are going to cut out another bit from my husband.  (Have you noticed how there is always a ‘they’ in these sort of scenarios?  A nebulous ‘bit’ of poorly defined humanity that we can’t bear to consider).  Once again a junior doctor will get to practice his yet to be refined cutting skills whilst having to consider that his patient is fully awake as this bit of surgery doesn’t merit a full anaesthetic.  Once again Steve can hear the sharp intake of breath as the more senior doctor reads Steve’s notes and elevates him from the ‘worried well’ pile to the ‘do this properly’ pile. 

In my head this is a pivotal day, this newest black mole (number 3) will, in due time, be cut into slivers and be peered at by someone who will pass judgement on its origins, on his (or her) say so we will be lifted to the realms of ‘its nothing’ or dropped to the depths of ‘its a secondary spread’, or the third, equally unattractive ‘ its a third primary’.   Whichever way we still have mole number 2 to contend with.  We still have this evening’s CT scan and possible Sentinel node biopsy. Its right now that the plates of our lives might shift, like some tectonic catastrophe, orchestrated by a higher being.  I just pray that the higher being is our kind God and that he will provide the miracle that we long for.

here we go again

I naively hoped not to have to write this blog again – but I am sad to say – here we go again.  Having had a clear CT scan the appearance of a black mole on the left side of Steve’s abdomen didn’t unduly concern us and to be fair, the surgeon just suggested to get it removed before someone got over excited about it.  So Steve duly turned up at what is now becoming an all too familiar clinic and got ready for another minor assault on his body.  I suppose the alarm started when the junior doctor was told to ‘take plenty, he’s had one cut out before’.  The scene that followed when we returned for the results was a classic.  We sat quietly waiting in the room and the surgeon entered, followed by the Specialist nurse – not a good sign – she had her head on one side in that ‘I am here to comfort you’ way, that only us cancer nurses have acquired over years of breaking bad news.

The surgeon was exemplary, but no amount of ‘interesting’ and ‘surprise’ and’lets just deal with the facts’ could mask the message.  The message was clear – there is another primary melanoma.  He went on to explain about sentinel nodes (key nodes identified by intravenous dye that indicate where the spread, if it has occurred, has taken place) and about wide local excision (cut even more away) and about lymph node clearance (removal of all nodes in affected area if this has happened).  It had an all too familiar note to it.  ‘But hang on’, I said, somewhat fearfully ‘what about the other mole a couple of inches above the one you have just removed?’  Let me explain, I have developed a disquieting and irritating habit of examining Steve’s body, always on the look out for the mole’s return.  This latest one was worrying me, and so it turns out – was worrying to the surgeon.  The atmosphere in the small room intensified.  Pin and drop come to mind.  ‘Oh’ he said, ‘that changes everything, forget what I have just said, we are doing nothing until we have had a good look at this one’.  It was at this point that I wanted desperately to seek solace in tears, but decided to hold firm, the mascara cascade could wait.  

He ran through the possibilities – it could be nothing (big prayers please), it could be another primary (that’s ‘very bad luck’) or it could be a secondary (in which case……well he didn’t say you’re f***ed because its not his language – but he didn’t utter any words of comfort and a look at the glance that went between him and his nurse told us everything that we didn’t want to know).  

Moving swiftly into overdrive (I do that so well) I asked about clinical trials and treatments and we entered briefly into the world of genetic markers and immunotherapy, swiftly brought back by the surgeon plea to keep the emotion out of it and deal with the facts.  (The day I manage that will be a miracle in itself).

So, our friends – here we go again.  Another biopsy on Tuesday, a CT scan as well and results by the end of the month.  Never before has ‘one day at a time’ meant more and never before have we planned so hard to ‘make every day count’.  

Thank you all for your thoughts, prayers and immaculate sense of timing.  You may never know how much your hug means, how much your email matters and what a difference a text can make.  Please journey with us, we need to see God’s love made real.

Miracles do happen

Today we went to the hospital for Steve’s lymph node biopsy.  There is something hideous about waiting, yet again, in yet another shabby waiting area – made relentlessly cheery by the addition of a few dog eared posters.

 We know about ‘crooked thinking’ (I teach it in workshops – I ought to know) , we know that investigation doesn’t equal definite, but our skewed take on life means that we think of ‘worst case’ and work from there.  We even came across the black bags that we used last time for the post op drains and unspoken, agreed that they ‘might come in handy’. Steve was ashen this morning and whilst waiting needed to do a wee quite disproportionally to the amount he had drunk. The radiographer called him with a voice that sounded to me very much like that of an executioner from death row.

And, within minutes Steve bounced back – and I mean bounced.  ‘We can go, he can’t find it’.  ‘Incompetence’, I inwardly screamed, and gently said – well, did he scan it, did he look?  (Funny how a nursing background makes you a leading expert on all things medical!) .  Well, he did do an ultrasound and there was no node to biopsy – did you hear me – no node to biopsy!

Now, I’ve told you before, miracles are low on the evidence base continuum, but we all prayed and now there is no node.   Find another reason if you like – but I know where my loyalties lie.  

We do still have to wait for the results of the CT scan – but we feel much more positive about that now.  So, here we are, back at home – rethinking, reprioritising and being hopeful.  What a difference a day makes.  Praise God.

 

a certain familiarity

Well friends, we wait with bated breath again.  On a routine follow up the consultant found a lump in Steve’s unoperated side.  ‘Oh dear’ we said (or words to that effect).  We don’t know what it is yet – it may be a passing enlarged lymph node, doing what lymph nodes should do, reacting to infection.  The surgeon said it could be an artery (really?!) or it could be that the cancer has returned.  Steve had a CT scan Friday evening and will have a lymph node biopsy and ultrasound on Wednesday.  And then we wait for a phone call, a letter, an appointment.  And we pray.

We have moved on a long way since we last blogged – we now both work full time (that’s about 60 hours each a week) on our business and will fully open the gym in the village at the beginning of April.  Our online system is being actively considered by a national company so we really just do not have time for the cancer to return with all the angst that that brings.

One thing we really should have done is book our ‘once in a life time trip’ to China – but when the CT results come through clear – that will be the first thing we will do.

We all know that life is finite but we are still surprised when we are confronted with the possibility of our own mortality.  Our biggest challenge is to not allow the fear of the future impinge on the present – to live every day and not to cloud it with the threat of impending doom.

Go kick

Steve saw the consultant this week who confirmed that there were no more cancer cells in the removed nodes – thank God.  He told Steve to ‘go and play football with his boys’ – music to the ears.  Its a turning point, a point that we did wonder if we would ever get to.  Playing football in the park is one of those things we took for granted, we got this house because the park is just down the road.  Its a ‘normal’ thing to do.  How complacent were we?  Never again will we assume that the world as we know it will continue as it is.  

A CT scan every three months is all that is left and I refuse to allow that to dominate our lives.  Steve is at the caravan just now with the boys.  Rumor has it that all sorts of rules are being broken – food on a tray in front of a video, heavy nintendo use, before you know where we are they will be drinking Cola !  Me?  I’m catching up on reading, emails, friends, life.  Who knows, I might just chill out!  I know we are all healing – we had Steve’s favorite hymn in church today and I sang it joyfully – no thought of tears.  

Going forward?  Its Barcelona in two weeks time.  We are so impressed with our travel agents – yes, I know we could have booked it on the internet but no way would we have had the confidence in the arrangements that we have now.  They (Premier Travel in St Ives) phoned us to say that the tickets had arrived, we said we would bring in passports and would need Euros.  Well, we arrived and they immediately found our file, knew we were bring passports and asked how many Euros we wanted.  (Somehow I have grown to expect inefficiency – how refreshing to be proved wrong).  We are now checked in at the airport (!) both for out and return flights!  Guaranteed connecting rooms at the hotel, and I have every confidence that if this were not to be the case that Premier would quickly sort it out.  A frenzy of clothes shopping has occurred and the pile of ‘must take’ is growing on the spare bed.  Any day now I will hear those words ‘do you really need to take all that?’ – but until then – pile it up!  Is this normal?

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