Living with a melanoma

Archive for June, 2012

celebrating!

A letter has arrived, one of those letters that you look at and leave unopened for a few minutes.  A letter from ‘the hospital’, not another appointment, not more information to try to assimilate?  Neither of those – its good news, the surgeon writes that of the 10 nodes that were excised, none shows any sign of cancer.  So, original site has been fully excised and nothing left there, sentinel nodes in armpit and groins – only one node was positive.  In that area, full excision of nodes and no further evidence of metastasis.  Thanks be to God, ticks all our boxes.  No drain, no sutures, wounds healed, no impending surgery, just a visit to the lymphoedema clinic, and a sign off from the surgeon.  There will be follow up CT scans, but we can tackle those on a ‘as and when ‘ basis.  Our new normal has arrived.  Steve will even have to go back to work!

So, celebratory lunch in the exemplary Windmill in Somersham.  Great service and fabulous food.  A necessary trip to Wildfrost (local florist) and the ‘must have’number plates for the Supra!  Even booked the parking for airport for Barcelona trip (appears that this was on hold pending return to normal).  

Talk about a new lease of life – Steve has cut the lawn, trimmed the much grown shrubs and generally tidied the garden.  As well as that marathon walk to Budgen’s.  My man is back; gone is the tetchy, stressed man – enter upright and bagless, the restored Steve.  Biblical texts spring to mind!

I want you to know the part you have all played in this fabulous outcome.  Every one of you that has read any section of this blog has played a part.  Knowing that someone ‘out there’ cares enough to read about our lives means so much.  To every one of you that has prayed with and for us, thank you, to everyone that has sent cards, good wishes, tissues, texts and emails, thank you.  To strangers that we haven’t meant who have sent good wishes, thank you.  To friends we see, thank you, thank you for taking the time to read this so that you are up to speed and know where we are.  To our wonderful family thank you, thank you for the early early morning texts and for the late night texts.  Thank you for love.  

I still need you, I want to carry on blogging, this has been so important to me – the power of arranging my thoughts into some sort of order has been invaluable.

Journey with us – who knows what might happen next?

feeling drained

Collective sigh of relief please, the drain is out.  No more tube, no more bag, no more measuring, charting or graphing.  No more trips to the hospital for dressing changes.  

We also have no test results pending, no surgery scheduled and only one check up to go to.  I think this is the return of normal life.  We can go back to the ‘right side of the bed’ – the drain had meant that we had to swap over – traumatic enough in itself!  In time Steve’s limp will go and he will get full mobility back.  there may be a bit of leakage initially – but so far so good.

The new vinyl is down in the kitchen – looks great.  And the wheels – how could I forget the wheels? Now, I like a nice car – don’t get me wrong – but ask me how many spokes the wheels on my car have and I would struggle to tell you.  However, the Supra now has blue wheels and you will remember, not any old blue.  (I’ve chosen a dress and matching shoes in less time than these wheels took to be finalised) .  The blue matches the dragon sticker and the gear stick knob – no, I’m not joking.  Matt came round to admire and there was whispering talk of a stripe here and a something there.    Life is short – just enjoy it – if its blue wheels – get them – if its a walk on the beach – do it.  None of us knows what tomorrow will bring – make sure every day counts – its up to you.

nearly there

Tomorrow might just be the day!

Steve has dragged around several feet of tubing, a concertina drain and a drainage bag for nearly 4 weeks.   Even the Big Issue lady outside Waitrose asked what had happened.  It has leaked, pulled and become infected.  It has hung on the side of the bed and it has been in bed with us.  It has been housed in a stripy blue bag and a more demure black back.  And yes, we know that many have much worse things in life to put up with, but this whole experience has taught me that other people’s suffering doesn’t make ours any less.  Steve’s cancer has made us (or we have allowed it to make us) very inward looking and selfish.  We don’t like this but don’t always feel that there is much spare to offer to anyone else.  

However, we seem to be drawing near to the end of this dreadful saga.  The Plastics unit said (after phone calls to surgeon) that if the amount remains low it can be removed tomorrow.  As it stands, tomorrow is a big day.  The flooring man is coming to replace the torn kitchen flooring (you remember the ‘whoops’ moment when the fridge got moved?) and, great excitement, the wheel man is coming.  Someone is coming to paint the wheels of the Supra.  Might be hard to demonstrate his job on ‘What’s my line’ ? Now these wheels have been the subject of much debate and head scratching and will, no doubt, continue to be the focus of attention.  If you are very lucky, we will post a photo, bet you can hardly wait! 

I have to be at the gym by about 08.00 and in Romford by 12.00 – you can imagine the pressure to get back quickly can’t you? 

Lets just hope that the decision tomorrow is the ‘right’ one    ………………………

tense

As I write this the penalty shoot out is starting – it seems that it is not enough to have a whole evening of football – it has to extend to some shouty / noisy thing when all is determined by the kick of a ball?

Our whole life is determined by the contents of the drain.  Is less more?  Well, yes and no.  Less is better but now Steve’s leg is swollen – maybe because the fluid is no longer draining into the bag or maybe because its all swollen because the drain is still in. Have you any idea how many times Steve has pulled down his trousers today to ask me what I think of this now?  All I can say is lets hope for strength for the Plastic Surgery Unit staff when he phones tomorrow – if they don’t say what he’s hoping for ………

Nevertheless, today has been good – pertinent church and the rain stopped for at least 10 minutes!

Draining

Yesterday (Friday) we trotted up to the hospital again, back to the Plastics unit, back to the same waiting room, back for a dressing review.  Great excitement as I overheard the nurse talking to the doctor and telling him the drain had been in for 23 days, but hopes dashed as she was told to leave it in.  We now have a spreadsheet and a graph to track progress of our ‘friend in a bag’.  However, today has seen the lowest total so far – so fingers crossed for next week. 

We’ve has a real family day today, boys are here and we went to the pub for lunch with Matt and his family.   Ben & Ethan are great with baby Thomas and are very patient as he attempts to fix all sorts of things with his plastic screwdriver.  Then back to us for Saturday night Toad in the Hole – yes, we have the same meal every Saturday!  

Of course, there was much tinkering with the Supra, mostly to do with a new gear stick knob which didn’t fit until Matt intervened.  Then of course a test drive, by Matt, any excuse, apparently it needed starting up?  

Steve is feeling very much more positive today, so the mood all round is lighter.  Perhaps this is the  first small steps of that miracle?   Steve says this ticks all his boxes 

Miracles

I never, ever thought I would write a blog like this, or, for that matter, think or speak like this.

I am praying for a miracle

There, I’ve said it.

One of the mantras of nursing is ‘if it isn’t documented, its not done’.  How true, never more so than when you stand in a coroner’s court (as I have done) and he shows a blank sheet of paper which is supposed to be a record of the patient’s vital signs.  He then asks, ‘so, nurse, how do I know that you observed this patient over this period of time?’  Well, there is no answer because it is useless to stand there and say that you did – or what you saw.

I have never, in all the hundreds and hundreds of sets of medical notes I have read over the last 40 years, seen the words ‘a miracle has happened’, so, not documented, not done’.   Patients would tell me that they were praying for a miracle, and I would nod sagely (I was good at that) and think ‘you’ll be lucky’.  So, have I been driven to look at miracles out of desperation or because I am part of a church that believes that we have a loving God, capable of anything?  Are miracles biblical stories or fully relevant in today’s world?

I am praying that Steve’s cancer has gone and will not return, that’s the miracle I am asking for, in the full belief that God could make this happen.

We had a rubbish day yesterday.  Birthdays are not good if you measure your life’s worth in years.  We were OK until after lunch, helped by a great friend who popped round, but then the stress of it all really got to us.  My children picked up on the rubbish that was our evening.  Isn’t it wonderful when you realize that your grown up children are just that?   Grown up.  They used skills that I didn’t know they had, they truly amazed us.   They gave us the best birthday present possible, they gave their time and their love.  Ticked all my boxes.

 

 

football

I am writing this to the backdrop of the sound of yet another football match.  I am sure that there used to be a football season?  Seems to be pretty permanent to me?  Oh well, ticks Steve’s boxes.

Fab meeting with the commissioners, lots to plan and papers to write.  So I came back full of enthusiasm and positivity, but thought that Steve, whilst happy for me, wasn’t really very keen.  That was until he explained how hard it is to plan and look forward to a future that he isn’t sure he is going to be part of.  I longed to say ‘of course you will’, ‘don’t be so pessimistic’ – but we don’t really know anything much.  I try to stop my head going there – I just blank the thought, knowing that fretting and worrying won’t make any difference.  But its not me that its happening to.   Dealing with our deepest fears is such a challenge, the fierce bravery of a man that confronts those fears, rationalizes them and moves on is astounding.  Its very humbling to find that the man I married is even stronger than I ever imagined.  

One of Steve’s fears is not that we won’t manage without him – but that we will.  As a mother I can remember thinking something like that when I went away to a Summer School one year.   Although I had put everything in place to make their week run smoothly, I still wanted them to need me, I didn’t really want them to be able to get through a week without me.  But got through they did.  

Its such a huge balance between independence and interdependence.  A balance between ‘life must go on’ and ‘I can’t possibly cope’.  I never wanted to be in this position and I don’t know how to help and what to do next.  All I can do is ‘be there’ and listen.  And continue to pray that the drain will stop draining so it can come out, and that the next CT will be clear.  One step at a time, one day at a time, one life – live it.  

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