Living with a melanoma

Archive for April, 2012

Control

I had never really realised before how difficult it is not to have control over your life – I feel that we are waiting to be told that we can get on with the rest of our lives.  We can’t really make plans as we don’t know if we are going to have time to implement them – or the energy or the inclination.  We have the best business opportunity that we have ever had just handed to us – but we are reluctant to go ahead ‘just in case’.  What is the just in case?  Its the fear that there may be cancer cells in Steve’s biopsied nodes that are going to change our priorities fundamentally.  But I think they have changed anyway.  We are less cautious on the whole – and more ‘in the moment’.  We are certainly much more likely to seize and opportunity and more likely to do what we want to do – rather than overlay every decision with ‘should’ and ‘ought’.  So, providing we get a good prognosis on Wednesday – we will start to discuss a very big and exciting venture.

However, there are some work / life balance decisions to make – we can’t work so hard that there isn’t time to do the things we want to – ‘cash rich and time poor’ is not for us.

We got very near to sitting in the garden today – I am sure that you too feel that it has rained for the last thousand years.  The river has burst its bank at Earith – I was very surprised to be able to drive that way home from work today.   We seem to be having a very wet drought – and who needs to use a hose pipe anyway?!  I think this will be one of those times that we all look back on ‘do you remember that Spring in 2012 when it just rained and rained?’ Just as Steve and I will look back on this whole saga and say ‘do you remember how frightened we were?’  We will emerge from this stronger and clearer about what really matters in life.   

 

Friends

We had friends over for supper last night and it was lovely – food, wine and chat.  We were able to forget, for whole minutes at a time, that we are trying to deal with the unknown.  These friends are incredibly special (but, by definition, that’s what friends are – incredibly special people) these are our ‘go to’ friends.  You know the ones – the people who you call, the people that you email when your world is falling apart.  We thank God for them, we thank God for sending them to us just when we needed them most.  We got to know these special friends when we had no idea that our lives were set to take a very unexpected turn.  Two very strong couples who have the strength to stay with us, wanting nothing in return but giving us everything we could want when we want it most.

We have thought a lot about giving this weekend.  The boys have a new ‘rewards’ system – its based on washers (yes, those round things with holes in the middle that go on taps) – they can earn washers for good behavior and then the washers are hung on hooks and accumulated.  Of course, washers have a monetary value – 8 to the pound.  So good deeds are now measured in ‘washers’.  We could now enter into a deep philosophical debate on whether altruism actually exists – but suffice it to say that the number of ‘good deeds’ performed this weekend is higher than in previous weeks!  Nevertheless, the words, ‘would you like me to’ and ‘can I help’ have been uttered several times in the last two days and we have had a wonderful opportunity to reward small acts of kindness in a tangible way.  There was some kerfuffle mid way through this afternoon and a bit of raised voices – resulting in two rather sheepish little boys coming into the kitchen and removing a washer each, but mostly all has been well.  It did make me wonder though – do I ‘do good’ for God or do I ‘do good’ for a self satisfied glow?  Do I need washers?  What I do know is that last night’s friends give endlessly with no expectation of reward – but if their giving was measured in washers they would have a bucket full each by now.  

We held it together all through Church today, thanks to the number of friends who ticked all our boxes – never before have I felt such overwhelming support – thank you all.

 

 

Under control

We are now inundated with follow up appointments – so I phoned the Consultant’s secretary and the one we need is next Wednesday afternoon.  So, on Wednesday we will get the information we need to plan the way forward.  It means we can move out of this fuzzy limbo land.  

In the midst of this we decided to create some chaos by having a new work top fitted in the kitchen.  Its lovely – real wood – Steve is busy sanding it down and oiling it again.  We were told that it would arrive  ‘one day this week’ but the fitter just arrived yesterday morning and we weren’t ready as the cupboards weren’t cleared.  I don’t like being unprepared – it makes me feel out of control and a bit of a wreck.  Wednesday’s appointment will put us back in control – we will know what, if anything we are up against – then we can tackle it – just like we tackled the kitchen (even though it meant cleaning out cupboards at midnight!) .  The ‘not knowing’ is very hard to deal with.  

I work a lot with overweight clients and they tell me that they feel better once ‘things are under control’ – when our eating and our drinking go beyond what we want – it is easy to feel that there is no control and that ‘things just happen’.   Really we could have phoned again about the worktop and found out when it was actually happening, we didn’t have to just wait.  And the hospital appointment – we have sorted out the myriad of options and look forward to gaining control back in our lives – not being governed by a dodgy mole.  Ticks my boxes! 

Here comes the Sun

Well, the 9 million people who read the Sun had something serious to get their teeth into today.  Fabrice tells it like it was – as he lay dying on the pitch he knew that God was with him and he trusted Him to get him through his cardiac problems.  God sent a cardiologist and skilled paramedics – there was a plan.  

We have to believe that there is a plan for Steve, for us.  And we have to trust that it is one that we will be able to deal with.  We appear to be in some sort of time warp, a sort of hiatus of nothingness.  Steve’s wounds are healing – he’s sore and fed up with being sore – but less sore than he was a week ago.  I have an interview for a job tomorrow – if I were to get it – do I accept?  We have just been asked to write a business case for an incredible opportunity with the our new company, shall we / shan’t we?  If Steve has no cancer cells in the nodes that got biopsied – then we will GFI.  If the nodes are ‘contaminated’ with cancer cells – then we have to rethink so much.  Neither of us do well if we are not in complete control – and this feels very out of control.  

But I expect that Fabrice felt completely in control as he began that match – a very fit young man, well prepared, well fed and well hydrated.  No one expected him to collapse and so very nearly die.  None of us expected Steve to get cancer.  For us, the expected order was that I, 20 years older, would be the one to become ill first.  We were so smug, so ‘sorted’.  We were in control, divorces sorted out, house bought, finances in some sort of order and future plans made.  I worried that Steve would have to look after me, little did I ever guess that I would be the one doing the feet washing!  

I did the driving this weekend – Steve is not able to and not ‘allowed’ to just yet.  Did you know that it is possible to be a passenger for 180 miles and hold onto the door strap all that time?!  Steve definitely did not feel in control on those journeys.  Nor, I must admit, did I entirely.  The wretched car has a noise for everything, driving it is like being inside a set of maracas.   There’s a noise when the front nearly hits something (such as the caravan balcony) and a noise when the rear nearly hits something (such as that silly little post in the car park).  There’s a noise when the hand break (its a switch thing) goes on and when it comes off.  And the best bit? – The car has the audacity to tell me when to change gear – a great big green sign saying ‘SHIFT’ flashes up – whether I want to change gear or not.  And if that wasn’t enough – Steve felt the need to tap me on the leg every time the light came on and I wasn’t ready to change gear at that exact moment.  So, who was in control on those journeys?  Doesn’t tick my boxes I can tell you!

Seaside

We’ve been away this weekend – we’ve been to our caravan on the Yorkshire Coast.  Its a ‘mobile home’ which is a misnomer because it is unlikely to go anywhere!  However, that does mean that it has loads of mod cons including double glazing and central heating.  Its our escape from the world and the boys love it too.  The TV broke ages ago and we haven’t replaced it.   We play Scrabble and Monopoly and read books.  There is something fantastic about seeing two young boys sitting and reading their new books on a rainy afternoon.

It really did rain loads too.  But we managed to get a walk on the cliff edge – or what is left of it.  When I  first went there we could drive on the coast road, then we could only walk it and now there is no road at all.  That has happened in about 7 years!  The sea is so mighty, we just stand and marvel at it.  The boys have grown very bold and now stand close enough to get wet with the enormous waves that break over the top.  When you see the sheer power of the water its impossible not to acknowledge that there is a strength far mightier than anything that we can imagine at work.  That power, God’s power, can cause the coast to disappear, the waves to carve their way through anything.  We have to believe that that power can stop cancer cells from invading, that power can heal wounds and make Steve whole again.  That ticks all our boxes.

Course finished

This module of my LighterLife course has finished – just one more block of 3 days to go.  Its been really hard work – lots of group facilitation practice finished off with an assessment.  There have been parts where I have struggled – not so much with the content – but with the way I express myself – I can be quite abrupt (no comments please!) – and have had to learn to be more assertive and clear without pushing my point too forcefully.  Its a skill I have been trying to put in place at home this week.  We haven’t had the finest couple of days.  I know from years of nursing that patients are invariably lovely with everyone else and then all hell breaks loose when their nearest and dearest arrive.  And we are no different.  We have danced around the pain (the physical, emotional and spiritual pain) of the cancer for days.  Steve was angry and I was sad – it took a long time to be completely clear that Steve isn’t really angry with me and that I am sad about all sorts of things – but its not his fault.  Now we are both tired and still cross and upset -but not with each other any more.  

We now have, proudly displayed on the dining room table, a working model of a 4 stroke engine – just what I have always wanted (and no, it does not tick my boxes!).  The suggestion is that it is permanently displayed on the shelves – may be not!!  The model even appears to spark at the right moment – it really is firing on all 4 cylinders – something that we are working hard to achieve at home.  Our timing is a bit out and our spark plugs are a bit furred up – think the gap is set wrong too.  We are using the wrong fuel and in the wrong gear more often than not.  However, we are hoping to get to the caravan at the weekend – for a bit of time and space – the human equivalent of a 30,000 mile service – now that will tick all the boxes.

Not at home

I’ve been away all day today at my LighterLife training.  It was hard to leave Steve alone for the whole day – but he’s coped!  I’m still not quite sure how he got his socks on but he seems to have managed.  Its that old saying isn’t it – ‘life goes on’ – and so it must.  Bins have to go out and newspapers need reading.  Its a tricky balance between being wrapped in cotton wool and ‘manning up’.  Its not possible to get it right all the time!

Anyway, today Steve’s latest project arrived – a model of a 4 stroke engine to build – sort of Lego for men I think.  Of course, Matt is behind this purchase – unrelenting in his mission to make sure that Steve understands how an engine works!  I rather think that going to LighterLife again tomorrow is a good idea! I think this piece of work may involve much concentrated effort – lets hope all the pieces are in the box!

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