Living with a melanoma

Archive for May, 2012

More preparation

Well, we have had a fascinating evening – you know how it is before you go on holiday – when you have to leave everything done just in case the Queen visits when you are away?  Well, I guess we must be on her Jubilee Tour – the house is immaculate.  The ironing will all be up to date before we leave tomorrow morning and the garden – well there is no stone left unturned.  The Supra has been shone (and an urgent newspaper fetched – which necessitated a long drive!) Believe it or not – we have even caught up with the back episodes of ‘Silk’ – the only programme I watch.  This is important as I seem to be completely incapable of turning the TV on, let alone selecting a recorded programme.  (Beware anyone who lives close by, you may receive an urgent text for help, help with the TV – not something meaningful like a crying crises!)

A nourishing supper has been prepared and Steve is gearing himself up for a pre midnight feast (I am trying hard not to call it a Last Supper) to sustain himself as he is ‘Nil By Mouth’ from midnight.  The bag is packed (do you think he should have pyjamas really? – bit late now) and the books selected, we have even downloaded scrabble onto the ipad.  

But the best bit of the evening has to be the leg measurements – every 4 cms from ankle to top of thigh as a base line measurement so that should lymphoedema develop – we will know how much – deep joy!  Compression stockings are hardly the height of sartorial elegance – but if they do the job and reduce any swelling they will tick the boxes.

If recovery time is inversely proportional to the amount of good wishes received then I reckon he will be up and about by Sunday morning and back running the following weekend!  Prayer matters – thank you all – we know that tomorrow we will not be alone.

Getting Ready

Well, we’re back from the coast (and what weather we had!), good to see Steve’s parents and Abbie and her children.  So nice to be a few steps from the sea.

Tomorrow is a big day – Steve has his surgery to remove all the lymph nodes in the affected area.  We have to be at Addenbrookes by 07.00 – not knowing what time the operation is actually scheduled for.  Patience and a good book I think!  Not surprisingly, Steve is apprehensive, especially as the memory of waking up from the last anesthetic is still very raw!  But we know that with the support of all those around us  and God’s unfailing presence, all will be well.

So, how do you prepare for an event like this?  Well, I’m off to work, part of the ‘keep busy’ style of coping.  Steve is planning to finish painting the kitchen and ‘do the edges’ – that’s tidy up the lawn and the boarders.  and of course, wash the Supra, always a good distraction when it all gets a bit much.

Planning ahead, Steve thought it might be fun to have a little bell so he could summon me as he lies helpless in bed.  Those of you who know me can well imagine my reaction to that!  As a nurse, the message is ‘ you need to get moving, can’t lie in bed, its bad for you’.  However, never one to stint on the important things in life, I was in Poundland yesterday – and, what did I see – yes, a little bell!  Now the bell is sitting, ready to be rung, next to the bed.  What do you think?  My guess is the first 5 times I might be really helpful, then I might develop a very selective hearing loss?  Steve should be home again late on Friday, we’ll let you know!

its not the number of breaths

What a glorious day – just the day to be beside the seaside.  We went to Robin Hood’s bay near Whitby.  Its a higgeldy piggedly village that we just wander around.  Its full of unexpected turns and alley ways and loads of steps.  Its built on the cliff side and is very steep, my calves are still shouting. It has a strong history of smuggling and lots of the houses are interconnected by their cellars.  The tide comes in very fast and its easy to get stranded.   We just did touristy things and bought lovely amber and jet earrings and postcards.

Image

We also bought a small sign saying:

‘Life is not measured by the number of breaths we take,

but by the moments that take our breath away’

I kept quiet and didn’t  tell the unsuspecting girl in the gift shop why we were buying it and we both managed to swallow hard and not cry in the shop.   Today was one of those ‘good to be alive days’ and one of contentment.  Steve sorted out how the boys can still get to Wembley and see the game against Belgium on the weekend after his surgery (thank you Jonny) and he’s sorted out his work schedule.

That feeling of overwhelming panic and fear has abated.  We know there is still a great deal to face, but we are feeling stronger and more upbeat and positive.  Robin Gibb’s death reminds us all of the fragility of life, but ‘losing his fight with cancer’ as so many journalists have coined it is so unhelpful.  With that comes the idea that had he just tried a bit harder, fought a bit more, he would still be alive.  Don’t get me wrong – a PMA (Positive Mental Attitude) is a great asset.  Being positive stops us all from sliding into a ‘half empty’ its all so awful state.  Being positive gives us the strength to face the day.  But cancer isn’t a disease to fight like a soldier fights a war.  Its a disease to be treated and lived with.  A disease to acknowledge and survive, using the  help and wisdom available to us.  There are definitely things that will help but the last thing you need to be is a loser as well as dead!

We got back and made an attempt to feed the ducks outside the caravan, but decided that they are so over indulged that they couldn’t be bothered.  So we just looked at the fast eroding cliff edge; watching it disappear by feet every few weeks leaves us in no doubt that there is nothing that will hold back the might of the sea.   We can only marvel at the world in which we live.

CT results

Lovely lunch yesterday at The Windmill in Somersham where we had our family meal on our wedding day.  We did presents and cards there – our beads for our bracelets –  and reflected on that special day.  Our waitress spotted the cards and chatted, maybe I was wrong to tell her that our first year of married life hadn’t brought exactly what we had hoped for – but Steve’s dessert arrived with a candle alight to celebrate the good!

http://www.localsecrets.com/commercial.cfm?id=10351~windmill+somersham+restaurant+pub+british+contemporary

On our journey up to the caravan the Specialist Nurse phoned with a date for Steve’s surgery (31st May) and told us that one of the Consultants would phone with the results.  So a mix of being pleased that we have a date and apprehension.  Bit excited, can you be excited that major surgery looms?  I think its more to do with ‘having a plan’. 

Then the heating wouldn’t work at the caravan when we arrived, but the on call warden arrived, like Red Adair, in minutes and fixed it in seconds.  (But it was a secret fix, not one he would show Steve, it was definitely knowledge he was keeping to himself!)  You will be delighted to know that I didn’t need to tell the unsuspecting warden that Steve’s got cancer.  (you will be surprised to know how many check out ladies are privy to the details of Steve’s treatment)

So cosily settled in we put the wedding CD on and looked at the photo album.  A mix of emotions washed over us and there were tears, but joy too.  And so good to be reminded of what we had promised each other.  And so wonderful to hear all the congregation promise to support us – and how they have delivered – we are truly blessed – thank you all for that special day and for everything in the last few weeks.

Today it is sunny (worthy of note!) and the surgeon phoned at the crack of dawn – no other spread seen on the CT scan – thanks be to God – ticks all our boxes

 

poems

Have you noticed how very accessible libraries are nowadays?  I have some lovely memories of a dear little library where I grew up.  A tiny place before the big shiny new one got built.  I can remember the smell, the shelves full of untold excitement, the sheer joy of finding a book in a series that you hadn’t yet read.  The little old ladies at the desk and the sacred hush of it all.  The little tickets that slotted into the books and were reallocated in a quiet, gentle, unhurried way when you returned the book.  

How different today – did you know that you are allowed to talk in a library now – in a normal voice at regular decibels?  And you can (in fact, must) check in your books – the machine makes a noise and you have to remember yet another PIN number.  And you get to check them out too.  But, joy, you can get kindle books and CDs, magazines and copious amounts of computer help.  The boys love the library, but the younger one spends an untold age choosing a book, closed to all suggestions.  During one of these protracted visits I browsed the poetry, finding a new volume of poems from the lovely Wendy Cope. Wendy is a bit older than me and has been the backdrop of much of my adult life.  This volume looks at aging and death, not in the least bit funny you might think – well, let me tell you different!  

‘My Funeral’ finishes;

‘Though I will not be there,

Glancing pointedly at my watch and fixing the speaker with a malevolent stare,

Remember that this was how I always reacted

When I felt that anybody’s speech, sermon or poetry reading was becoming too protracted.

Yes, I was impatient and intolerant, and not always polite

And if there aren’t many people at my funeral, it will serve me right.’ 

Somebody please read this poem when my time is up!

http://www.amazon.co.uk/Family-Values-Wendy-Cope/dp/0571280625/ref=sr_1_3?ie=UTF8&qid=1337600272&sr=8-3  

 

museum

Church was good today – all about ‘being called’ – really challenging – trying to discern God’s plan is never an easy one.  Thought I held it all together quite well – only lost it twice – its those wedding hymns that get to me!  

The passport saga continues – but we edge ever closer and think we are nearly there with the CRB checks for Church work.   Neither Steve nor I deal well with sets of rules – so these forms don’t constitute our favorite tasks!

I am sure the garden is doing well and we will really enjoy it if it ever gets warm enough!  Much to our surprise the asparagus is growing – well, one piece is – hardly  a feast just yet!  And the potatoes are growing out of the bag again – so more compost added.  Nothing has yet eaten the carrots and the beans are growing in a way that Jack would have been delighted about.  

The race track remains under soggy construction – its turning into a big production, but ‘will be good when its finished’.  I think that the making of it is the best bit – all that gooey wallpaper paste and torn up newspaper on a wet Sunday afternoon!  

We also discovered the Norris Museum in St Ives – how bad that we have only just found it!  And what great displays – not an electronic anything in sight.  I do feel that the museum itself is of historic value – and largely untouched since the 50s – but Ethan thought it was great and we spent ages looking at the big beasts! 

http://www.norrismuseum.org.uk/

So, a good, old fashioned day?  Yes; yes but.  A lot of days have a ‘yes but’ quality about them.  Try as we might, the fear of the future invades the present.  Knowing that if Steve gets through the next 18 – 24 months his chances of living longer are greatly increased adds a certain poignancy to each day.  The strain of ‘what if….’ can’t be ignored, but has to be pushed to the back of our minds, if not, every day is ruined.  As our soon- to- leave- the -country missionaries told us today – ‘its all about Jesus’.  On our own we will get in a dreadful muddle – but with prayer we can call on Jesus – only He can make each day a celebration of life, only He can take our fear away.

what is normal?

Today felt like quite a normal day, I have to say that I am not entirely sure what that is any more, but it felt like our normal.  Steve went for a run, which is what he always likes to do on a Saturday morning but hasn’t done for a while.  And we went to St Ives.  Hardly exciting, but so comfortingly ‘normal’.  I don’t think there is more than a few minutes that go by without one of us remembering what Steve is up against, but life goes on.  Bills have to be paid and passport forms completed (that was a challenge!)  The football got watched and an amazing papiere mache race track is being constructed.  We had Toad in the Hole for tea (we always have Toad in the Hole on Saturday!) and now there seems to be more football on.  All perfectly normal.  And, let’s face it, its perfectly normal to get things wrong with us and very normal to get the treatment and get better.  And above all, its perfectly normal to die.  We will all, without question, die sometime.  For many its not the right time.  But as Christians we know that a more perfect world awaits us and we take comfort from that.  

But right now, life is for living.  This time, one year ago, we were preparing to get married.   The bridesmaids’ dresses were finally finished, their little bags made and the boys’ waistcoats hanging up ready.  The photos on the stairs remind us of that happy day.  So much hope, so many plans.  Now the little babies that were held in proud Dads’ arms are walking about on their own.  Another dear little boy has been born.  The girls are growing and learning in the way that only young girls can.  Steve’s boys are learning all sorts of manly things – mainly involving bits of car engines.  My children continue to have their own unique roles in our lives.  When Steve made his decision about surgery he ‘popped out’ (the Green Man is doing well out of us!) to chat it through with Matt. I thought I might burst with pride that I had a son with so much compassion and a husband with so much insight that they could support each other in tricky times.   We didn’t know what lay ahead as we prepared to leave for church a year ago.  I walked with all my tiny grandchildren – what an amazing memory.  We didn’t know – I’m glad we didn’t, but I am so glad that we are where we are.  We are married, we have a lovely house, we have an incredible and large family and we have the support of so many wonderful people.  How can we not count our blessings?  For every ‘normal’ day I thank God, for it is in the very ordinariness of life that the greatest joy can be found.  Ticks my boxes

                                      Image

Tag Cloud