Living with a melanoma

Archive for June, 2012

driving

I think Steve had one of those ‘just do it’ days today.  I went to work and he a) drove to St Ives – to renew my (!) library books b) lugged the compost out of the back of the car and c) planted out a few little plants. He’s still standing and no little nap this afternoon.  The drain is about the average and he has no extra pain.  Look, I know I promote exercise as part of my work – but really, really, I did not tell him to do all this.  But do you know what?  He looks brighter than I have seen him look for a while.  I know what it is – its because I left him a list – you just can’ t beat a jobs list to motivate you.  (I can practically hear some of you saying, ‘leave the man alone, cut him some slack’ !)

I am off to see the commissioners tomorrow to try to persuade them to commission exercise programmes for people with health issues from us.  Well, if you don’t ask ………I’ll let you know how it goes.  A long awaited phone call with another organisation has been postponed – but I can get the information to them by email.  Life is full of raised and dashed hopes, work arounds and compromises.  What I struggle with is ‘letting it go’.  So what if things didn’t work out just as I planned – work round it, come at it a different way. Concede the point – will it matter in 5 years time?  or even 5 weeks time?  Don’t sweat the small stuff, save your energies for the big things in life.

Another prayer in our toilet (I wonder what sort of picture you have of this worship type place?!)  

‘God grant me the serenity to accept the things I cannot change, 

the courage to change the things I can

and the wisdom to know the difference’

 

I know its old hat, I know its been said many times, but in my mind it still holds true and never more so than now.

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feeling drained

Great church service – until we got to the end to hear that our much loved minister is leaving – great sadness and a huge challenge to us all. How will we manage?  He has been with us every step of the way, thanks to him we are married and thanks to him we have amazing support through this whole wretched business.  As a church we are strong, but individually we all have our weaknesses.

In fact, today was going quite well until we discovered that the drain, that was showing a really good reduction day on day, had decided to chuck out a great load extra.  This really did not help with the general mood and took a few hours to get over.  Its really hard not to make a catastrophe out of a hiccough.  We put so much store on what we can  measure.  But really its the immeasurable, the unfathomable that we should really put our faith in.  Steve picked up two readings at House of Prayer on Thursday and they have really sustained him ( Philippians 4 : 4-7 & Jeremiah  29 : 11 – 14) , these are destined for the loo door (where we stick all useful verses and poems) to remind us of the omnipresence and support of God.  

Its Steve’s birthday on Wednesday, there will be sausage rolls and cake as the boys are coming to tea.  I am sure there will be candles and singing.  There will be hidden sadness and outward jollity.  There will be fear for what lies ahead and apprehension about what next year will bring.    And there will be hope, hope as we drive our business forward, hope as we tackle another year, another month, hope as we tackle the day.   Every day brings a challenge and every day brings its own joy.  The challenge to find contentment threads its way through our lives, just as our minister has threaded our lives together.  Our lives won’t unravel if he is not just round the corner, constantly on call.  He has taught us well, he has shown us that we have the skills to tackle what lies ahead and make sense of the muddle of living in an imperfect world. That he will leave with us.  Would that we had had time to give something to him, that would have ticked our boxes.  

hospital trip

Another trip to the hospital today.  Just a dressing check and collecting more supplies.  No more antibiotics, which is good.  

We did loads today, early church again (followed by another sleep for Steve!) and various errands and jobs to do.  Lots of things ticked off my never ending lists.  

The boys are here and a special treat has been to watch the football, requiring crisps and snacks and much shouting.  Its good, perhaps we are finding our new normal.  Certainly there are more moments of contentment (can contentment be measured in moments?)

A phone call (in the middle of Tescos) confirmed that critical illness cover has been paid.  I have very mixed feelings about this.  Great that there is a bit of cash to spare, but what an awful way to get it.  You know I said I worry about the wrong things?  I think I also wish for the wrong things.  Having a bit of extra money doesn’t really tick boxes.

Early start

It’s House of Prayer week at our church and we volunteered to open up at 06.00.  It’s one of those things that sounds like a good idea at the time!  So today, I did no exercise, we didn’t even walk to church as Steve can’t do it there and back yet.  I even drove to a meeting in the village later in the day as I managed to completely run out of time.  So, for me, that was a bit of a sacrifice and a bit of an inward struggle as not exercising doesn’t come easily to me.  

But it was so worth it – the church is amazingly laid out with all sorts of prayer stations and a wonderful sense of calm and peace.  However, I am ashamed.  Yes, ashamed.  I could not sit still and pray.  I could not keep my mind on one thing.  I couldn’t even read the words in a slow and considered way, I just raced through them so I could get onto the next one.  It took me half an hour to even realize what I was (or rather was not) doing.  Another15 mins to try to calm down and the last 15 to actually pray – no wonder I never find time to listen.  It was such a steep bit of learning – and it was only 7 am when we left.  We are doing the same tomorrow and I am going to slow down and think, listen and pray for as much of the hour as I can.  Steve appeared calm throughout.  How often I find myself reading the paper, eating a meal and checking emails all at the same time.  Crazy!  I am always telling clients to ‘be present’ with their food and concentrate on what they are eating – think I need to heed my own words.  

Today has been good though, I have been to the office and built more on our plans of yesterday.  Great meeting about a church project, with someone so gentle, kind and diplomatic (more skills that I could do with learning!) that even a challenge was put in a way that I could hear and respond positively to.  

As for Steve (once he had had a short (!) nap to compensate for his early start)  (I would like to tell you that this is because SGC, but I always try to be honest on here …….) he set to work.  He hoovered – this is really interesting because I kept noticing that there were crumbs on the floor in a sort of abstract way.  It eventually dawned on me that I have hoovered once since we moved here and no longer register it as a job to be done!  He also weeded the drive which was dire.  Both obviously required much bending and glad to say that this hasn’t meant loads more drainage, so lets hope the body is learning to reabsorb the fluid. Off to the hospital for a wound check tomorrow.  Seems to have healed now that we have been using an iodine dressing – see, Florence did know what she was doing.  It just comes ready impregnated into the dressing , not in a delightful brown bottle to be poured into a little dish. Such progress.    

steps forward

Steve now has black bags for his drain – perhaps not a big deal in the grand scheme of things – but very significant if you have been walking around with a blue and green stripped bag hanging off your trousers!  The drain continues to drain a fair bit which is good – because otherwise the fluid would be pooling in Steve’s leg – but more than we want because it needs to be less than 35 mls a day to safely remove the drain.  

Thanks to the interactive games thingy I was telling you about, Steve can now play football with his eldest son on the console even when Ben is 30 miles away.  To be honest, its all a bit beyond me – I don’t even get how to move the players around the field – but its a great toy for connecting.  

Great conversation on the business venture – very positive and we are definitely getting somewhere with the ‘big plan’ and also making small steps too.  Some days its really hard to motivate myself to make an effort and plan.  Some days it would be easier to do very little, but life does go on and we have been given skills – it is up to us, up to all of us, to get on and use these skills.  

‘Our deepest fear is not that we are inadequate

Our deepest fear is that we are powerful beyond measure

Its our light, not our darkness that most frightens us.

We ask ourselves, who am I to be brilliant, gorgeous, talented, fabulous?  Actually, who are you not to be?

You are a child of God.

Your playing small does not serve the world.’

Part of a poem by Marianne Williamson, quoted by Nelson Mandela

A copy of this is pinned to the inside of our loo door – it certainly ticks my boxes

Man back

Yesterday was a fun day.  I got back from work to find two very guilty looking men in the lounge.  You know when you feel that the TV has been suddenly turned off – like when the boys are watching something when they have been told ‘no more TV today’?  It was the cable trailing across the room that gave it away. Oh, and the handsets close by on the settee.  Grand Tourismo !  No, I don’t understand either but it seems that its a great game to play against someone else and now Steve can text his mate and they can race each other when both is in their own home.  (I have probably got the detail wrong, but you’ll get the drift) .  What matters is there was a sense of fun and much laughter in the house, the very best medicine!

I decided that a swift walk was just what I needed to do – and left them to their game.  The feeling of lightness lasted all evening.  The bathroom man came and we have chosen some very sparkly fittings.  Middle son phoned and we had a fab chat, grown up children are such a huge blessing.

So, we look forward to a great day today, important business discussion lined up, the sun is shining and I have had a lovely sleep.  Really, nothing has changed in a SGC  (Steve’s Got Cancer) way, the prognosis hasn’t altered, the wound is still draining, there is still some pain,  but our perception of life is different.  Hope and love, a powerful combination, ticks boxes!

Work

I have been thinking about what work is.  For many years work was time spent in paid employment.  And running alongside that was housework and childcare work.  I fought my way up the corporate ladder and reached a decent salary.  Steve, who was at one time my manager (yes, really!), reached that level much more quickly.  Two high earners bringing in a decent amount of money.  Excitement in my job?  Nil.  Job satisfaction?  Nil.  Opportunity to influence?  Nil.  Chance to shape own work?  Nil

So, as you know, I retrained and have now got exercise professional qualifications, health assessor skills and weight management counselling qualification.   Excitement in job? Continuously.  Job satisfaction – great and potentially enormous.  Opportunity to influence, – sky’s the limit .  Salary – pretty poor – does it matter – not a bit.  As Branson says in his book ‘Screw it, Lets do it’ – do what gives you fun and the money will follow.  But just get on and do it.  Today I worked in a private hospital doing health assessments, I trained a client, ran a weight loss group and discussed a village 5k and Trim Trail with the council.  That’s what I call ticking all the boxes.

So Steve has been on his own all day.  And its been fine.  Thanks to texts we have kept in touch and all is well.  A bit of peace and quiet has done him good.  And he’s worked through ‘the pile’.  Have you got one of those?  Its a pile of miscellaneous ‘stuff’ that needs attention, bills, quotes, letters, you know what I mean.  It feels good to see order around that – that’s work too.  Football has been watched and left overs eaten up.  (We had ‘bottom drawer soup’ – all the veg from the bottom drawer of the fridge cooked up together, plus a few secret ingredients – so secret I can never replicate it exactly, ask my children, they remember it only too well!).  Books are being read and peace reigns.  

Sometimes you can just try too hard.. You can work so hard so the that it blots out everything else and you can try so hard to be all things to all people that you end up being no good to anyone.  Sometimes we lose the ability to just ‘be’.  Paul said, ‘Work hard and cheerfully at whatever you do, just as though you were working for the Lord’ (Colossians 3:23), its a balance, giving what you can and doing your best, but keeping time to rest and recuperate.  ‘Having finished His task, God rested from all His work’ (Genesis 2:2) perhaps we need to learn to work and rest and find the balance?

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