Living with a melanoma

here we go again

We have been quiet for a while, lots of emotional adjustment to do.  And just when we thought we were getting ‘sorted’ , that gut wrenching request ‘could you come in to get the results of your biopsy – tomorrow’.  You just know don’t you?  The most recent CT had shown 2 lymph nodes, ultrasound guided biopsy found one – histology found malignant cells.  We were told today, efficiently, effectively and honestly.  With compassion and understanding (and an offer of tea – that’s when you know its really bad).  So – lymph node clearance in the other side as ‘urgent’ – next couple of weeks.

More hospital, more pain and a drainage tube – deep joy!!

And the prognosis?  Let’s just say its not good.

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news

Its funny how you measure good news isn’t it?

 

Today Steve has heard that he has a clear CT scan and needs no further surgery.  That is good news.  He does have two intransit secondaries (not another primary as we were told).  This means that there has been spread from the first melanoma which was on his back but as its spread locally its not as bad as if the spread was a long way from the original.  (The two new ones are on his abdomen) .  He remains at Stage 3 – which is better than it might have been.

 

The treatment is continued surveillance (he sees the surgeon again in 3 months and a CT in 6 months time) – and clear instructions to get on with life. 

 

Barcelona here we come!

waiting

I’m an impatient sort of person; if something needs doing its best done straight away.  Procrastination just isn’t in my vocabulary.   If the rubbish needs putting out, it needs putting out now.  There is never a pile of ironing and the washing up always gets done.  Now, depending on your viewpoint, I am either a paragon of virtue or a complete pain in the whatsit.  No comment is probably your safest bet.   So you can imagine that I have been tested over the last few weeks as we wait for Steve’s results, as have many of you.   Let me tell you, I would have phoned to find out, demanding that someone, somewhere, finds out and tells me – now.  Steve has a different approach – he actually doesn’t want to know and would rather remain in a state of unknowing.   I therefore oscillate between; the nurse hasn’t phoned because she has; forgotten / not got the results/ is off sick;  can’t face telling us awful news over the phone.  Its made planning difficult; that’s the understatement of the year.  We have had to decide whether to plan as if all will be well or not bother at all.  You will notice that I am fairly black & white in my thinking – there are no 50 shades of grey for me, ( that’s a different blog). 

So, plan we have.  Gym number two soon to be kitted out and is that number 3 we see on the horizon?   An extra bit of kit into number two (that’s another, different blog), some management training for our 2 fab gym leaders and a team building day for all the staff.  Oh, and lets plan Christmas.   Apparently a fake tree complete with polystyrene falling snow has been sourced – I can hardly wait.  

We don’t know what Monday will bring, worrying won’t change the outcome.  So in the meantime we will Keep Calm and Carry On – meanwhile, is that some washing that needs folding?

what is in a number?

When you were a child did you ever draw a a picture by joining up the numbers, or paint by numbers?

Numbers are an imperative, we were talking to one of our staff today and he told Steve that he thought that 40 was old, that didn’t go down well i can tell you.  

We have 6 children between us and 7 grandchildren.  We know how many members we have at  the gym and how many minutes it takes to run 5k.  Numbers are integral and essential to our lives.  We measure our weight in numbers and our driving speed by a number.  I am a pretty poor mathematician but I can work out how many ounces of flour to put into a cake and on a good day can tell you the dates of the birthdays of all my children.

So, when you are worried that your days are numbered you have a bit of an idea what that means.  Or have you?  Does any of us really know how many days, months or years we have left?   We can guess and hope but we could well be wrong.  This is where numbers let you down, they don’t tell you hard facts, that just give you ideas.   You can play the ‘bucket list’ game, ‘if you only have 18 months to live, what will you do?’  Crazy, crazy.  Is that 18 months like I am now or 12 months of OK and 6 of dying – that number is rubbish – and when you get to 18 – what do you do – lay down and wait?  

We all have a limited time on this earth, to do with it as you choose – but choose knowing that the number may not be what you are reckoning on.  We all really have just one day – and that’s today – use it wisely – it won’t come again.

Life is not measured in the number of breaths we take but by the number of moments that take our breath away.

 

Exercise

Today is a little easier, I haven’t lost my temper once (there’s time) and I haven’t cried.   Progress.  That’s what we have now learnt to call a ‘better’ day.   I actually forgot for whole periods of time (like 10 minutes) that any day now we will hear how much surgery Steve has to have and when that might be.  There is something intrinsically awful about waiting for news that can only be shades of bad.  Steve’s red hair has predisposed him to getting a melanoma and I have to say, hasn’t put him high on the tolerating troubles scale.  If Steve isn’t pleased then do I know all about it.  However, as I say, today is a good day (no, we didn’t see red cars on the way to work – if you’ve not read ‘Curious Incident of the Dog in the Night – skip that bit) and its good because we have leaned on each other and loved each other.

I went out to a client today and got back to the gym to find two exhausted men – Steve is helping Michael to learn about how to manage Bluntisham gym.   Now Micheal can lift eye wateringingly heavy weights and Steve can run and bike for hours, but working out the staff rotas up until Christmas nearly had them lying on the floor.   I managed not to say that I had spent large parts of my career as a ward sister planning much more complex rotas – thought it best to be quiet.  

We finished work early today – only 11 hours on Wednesdays!  And we set up my study (reclaimed part of the garage) – got heating, a rug, a blind up at the window, desk and shelves – brilliant.  Now I can write to my heart’s content and be around post surgery.  So you can see why its been a good day.  We are also basking in an act of huge kindness.  A month ago I had never watched a box set of anything, but we have got completely hooked on Homeland.  We avidly watched the first series and the person who lent us that said she had series two which we could also borrow.  Imagine how I felt when she gave me an unopened box – ‘you have it first’ she said.  She hadn’t actually got it so had bought it specially.  Its the little things that glow large.

Oh, and when I asked Steve why today was so much better he said that he had decided to ‘get a grip’ (I do hope I didn’t actually tell him to do that in the midst of black Monday?) and that he has decided that he feels much better if he does half an hour of exercise at an appropriate level – gosh – anyone would think he lived with someone whose specialist subject is exercise and cancer!

 

its so tough

If you are in a relationship I bet that every now and again you get a bit cross with your ‘other half’.  Depending on what sort of people you are, you probably react differently.  Failing to do something or doing something that it would be better not to have done  usually elicits some sort of response.   For some couples its a steely silence of a duration measured in hours (or days) for others a full blown row accompanied by much shouting and door slamming.  I guess that more often than not, its somewhere in between and dependent on the severity of the ‘crime’.  

Much as I wish it didn’t happen, Steve and I can irritate each other.  And do you know, Steve’s cancer hasn’t stopped this – but what it has altered (or is altering ) is my reaction.  I am trying so hard not to fly off the handle.  Those of you who know me well will know that this requires real determination on my part.   (My default position for lots of situations is ‘off the handle’) 

Cancer isn’t just about surgery, scans and drugs you know, its about love, time and forgiveness.  Its about acceptance and tolerance, repair and recuperation.   Most of all, its about today because tomorrow might be very tricky.  

Ben Hunt-Davis (an Olympic rower) – has written a great book ‘Will it make the boat row faster?’ – the focus is on deciding if what you are planning adds to your core business or is it an unnecessary frill?  Steve is more keen, he tells me, on ‘does it stop the boat from sinking?’.  So, is what we are going to do next going to keep us afloat?  Will it buoy us up, keep us positive?  If it is likely to drag us down – we are just not going to do it, if it is likely to rob us of precious time – we’re not doing it.  At first, this feels selfish, but its not – its pragmatic and realistic.  We have limited time together – we are not about to sink under the weight of the worry and the ‘what ifs’ – we are going to keep afloat for as long as we can, one day at a time.  So, this cold wet evening we are off to the caravan – nothing like a bit of sea air to stir the soul!

I did get asked today which of two very grand Barcelona hotels I preferred .   Can I feel a bit of a plan taking place?  Get those results (whatever they may be) and I can feel a few days on a different coast line keeping us afloat for sometime!

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