Wee small hours

Dear-3AM

I mentioned earlier that it has been exactly a fortnight since I heard those words: ‘You have cancer.’  Since then, the world seems to have twisted off its axis; time has lost its meaning, and I am pretty certain that any minute now we will be seeing ‘The seasons alter’ and ‘change / Their wonted liveries‘.  Sheesh, would’ya listen to me?  Grandiose or what?  Deluded.  And with an overinflated sense of importance.

However, something is preventing me from sleeping (what could that possibly be, I wonder??).  I am becoming far too familiar with 3am.  And not in a good way.  Sometimes I am woken with vaguely disturbing dreams that are just out of reach as I achieve consciousness.  Sometimes I wake as if in mid conversation with myself.  Sometimes I am in mid conversation with others.  Always I wake fully alert.  It is probably the most awake I feel all day.  Without wishing to be anymore dramatic than I have already been – actually, I’m not sure that’s possible having suggested the world has spun off its axis because of me – my nights feel a little like John Fuseli’s painting of The Nightmare:

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without the donkey.  There are definitely no donkeys in my nightmares.  Chest crushing demons yes.  Donkeys no.

Tonight I am doing my utmost to combat this situation.  I really have to as the shadows under my eyes are beginning to become a defining feature.  Not that I am vain or anything.   The plan is as follows.  I have been off caffeine since midday.  I am burning ‘night-time’ oils from Neal’s Yard.  I am already in my pjs.  My soothing tea is being sipped.  I am about shut down my mac and all screens.  The sheep will be counted.  Bed time stories will be told.

If this plan fails, I may have to take up knitting.  Desperate times, people, desperate times.

Hearing the word

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It is a fortnight today since I first heard the words ‘You have cancer.’  Unquestionably that is a bit of a bad way to start any day.  I still find myself reeling when I hear others use that word.  Apparently it is ok for me to say.  And I do.  Quite frequently as it goes.  But somehow hearing others say it in connection with me takes me aback.  Each time, I do a bit of double take, I kind of want to correct them with a ‘Sorry, no, you’ve got that wrong,’ or a ‘Cancer?  Me??  I don’t think so,’ or even a ‘Don’t be absurd!’  Hearing others say it makes it sound so much more serious than when I say it (and yes, I do realise how ridiculous that sounds even as I type it).

Being with my Mum this weekend inevitably meant hearing other people talk about it: my Mum; my Mum’s friends, my Mum’s church.  And I have no problem with any of them knowing.  Or talking about it.  Or anything really.  It is just a bit weird.  It is even weirder realising that your eighty year old mother is actually fitter than you.  That is not weird.  It is downright depressing.  There is something in the natural order of all this that has been disturbed.  And I do not like it.  I should be caring for her.

Who am I trying to kid?  My mother is the last person in the world to allow anyone to care for her (not that we don’t try).  Feisty, fiercely independent and beautiful in spirit and nature, she will fight for her right to care for her children till her last breath.  I am enormously grateful she can support us the way she is doing.

Pilgrimage

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This path I have been forced upon feels very dark and scary at times.  I suppose that is why I resort to humour to lighten things up.  Or at least attempt to.  Because if I am laughing, at least I am not crying.  Or screaming in terror.  I know God is with me.  I know he walks alongside me.  But I would still rather he walked alongside me in the balmy seas of the Caribbean or as I potter about planning my new kitchen instead of hiking up to Breast Units for me to flash my hooters at yet more people.  Not that I want him to absent himself on Wednesday.  I very much want him there with me.  I would just rather the whole thing was unnecessary.  People often talk about their ‘cancer journey’ and the thing about clichés is that they have their roots in real meaning.  I am inevitably going to be changed by this experience.  Where I end up is going to be different from where I began.  I must confess to being tired of ‘life changing experiences’.  I have had more than a few.  I do wonder what all the lives I have been changed from would have been like sometimes.  Perhaps someone else is off living them?  Rude.

Today at my Mum’s church, there was much talk of their Arch Bish – top all round bloke, John Sentamu.  Used to be Bish of Birmingham and we love him.  Between Advent 2015 and Trinity 2016 he is walking all over his diocese as a pilgrimage of prayer, witness and blessing.  For this, he composed the following prayer:

A Prayer for Setting Out on Pilgrimage

God of Our Pilgrimage, Thank You for Your Friendship.
Be the Fire Leading Us.
Be the Star Guiding Us.
Be the Good Shepherd Calling Us.

May the Spirit, Strengthen Us
For All that Lies Ahead.

May Your Holy Angels, Surrounding Us:
Watch, Defend and Protect Us Against All Evil.

Amen

Feels appropriate, no?  And I rather like it.

Cooking up a storm avec ma mère

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Being nestled in the bosom of the ancestral home has its advantages.  I am being lavished with maternal care.  Last night, I even pulled an all nighter – didn’t get up for the loo once!  Actually, that is the first night I have slept properly since this whole debacle began.  Funnily enough, I am still knackered.  It is like I have a hangover.  A sleep hangover, if you will.  Because the two (very) small glasses of wine I consumed certainly did not cause it.

Mum has been very keen to help in some way.  Using her kitchen has been an absolute godsend.  I have made industrial quantities of meals that will be filling the freezer on our return.  I rather suspect the not having a kitchen thing is going to be getting to me soon.  We are down to trekking upstairs for our water and washing up now.  That may be just a tad trickier once I have been trimmed in the breast department.

And what do you think of my new mug?  I saw them in Waitrose last week (where I am, of course, a regular shopper *cough, cough*).  Mum spotted them too and I am now the proud owner of one!  It will sit, pride of place, on my new soon to be installed kitchen dresser.  I would far rather have this as a reminder of this time than something in pink.  With which I am still having problems …

And breathe …

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I finally cracked at 12:30 and rang the number for the bosom friends (breast care nurses) at my local hospital.  It is always an answerphone but so far they have been brilliant at returning calls within in the hour and this was no exception.

By then we were on our way to Oopnorthshire to visit my Mum for the weekend but hurrah for mobile phone technology!  One returned call later and I have two appointments lined up for Wednesday 2nd March: one with a breast surgeon at 11:30am and one with a oncoplastic surgeon later in the afternoon.  This all bodes well.  Certainly my equilibrium is restored sufficiently to relax into the maternal care and attention being lavished upon me.

Waiting, waiting, waiting

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This is how I look right now.  Partly from way too much coffee.  Partly from way too little sleep.  But mainly because I am willing the phone to ring.  As techniques go, it does not have much to recommend it.

Yesterday, the Multi-Disciplinary Team (MDT) meeting at the All Singing All Dancing Breast Unit happened.  And my knockers were discussed (do you think there should be bonus points for the number of synonyms for breasts I can get into this blog?  We could start a game?)  At some point today I will be contacted and hopefully given a clue about what happens next.  Probably in the form of a clinic appointment for next week.  I really NEED to know something.  It is getting very difficult to ignore the fact that I have a life threatening condition that is only going to get worse.  I know it is in hand, but frankly, I really would rather it actually was in someone else’s hand, whereas currently it is still very much on my chest.  I have lost all faith in time.  I have always joked that it is stretchy.  Now it has become extremely unreliable.

Homeward bound

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Do you know what this is?  More to the point, do you know what it represents?  It is obviously our new boiler but it means we now have heating.  And hot water!  Our totally amaze-balls builders have pretty much done the impossible and managed to complete two weeks work in just a week.  They have been putting in extraordinarily long hours in order to get this done as they were concerned about me and wanted to do something to make our lives a little easier.  How incredibly kind!  I love them.  With an unseemly passion.  It will take all my self-control not to flash my as yet un-mutilated rack at them in the coming week.  The Captain assures me I must exercise control as we do not want to scare them away.  Rude.

So while we remain kitchen-less for sometime to come, we have decamped from the boat (and the make shift sitting area aboard) and moved back home.  Hurrah!

Tomorrow is the day I am hoping to hear something about my referral to the All Singing All Dancing Breast Unit.  They discussed my case at their Multi Disciplinary Team meeting today and will hopefully have some idea of the way forward.  Here’s hoping.

Playing favourites

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I did not realise I had a favourite breast.  Quite frankly, it is not the sort of thing I had given a great deal of thought to.  If I had contemplated it at all, it was really only in a comic Blackadder Nursie kind of way (‘Right breasty-dumpling or left breasty-dumpling?’).  Jokingly I had, of course, blamed the Captain, for the current state of affairs as he has always lavished more attention on my left breast.  ‘You’ve broken it,’ I kindly said.

Last night in bed, as we went through our usual settling routine:

  1. My head on his chest
  2. Both roll onto left side and spoon
  3. Both roll onto right side, spoon and hopefully fall asleep

I realised with some shock that I do indeed have a favourite.  And of course, that favourite is my left.  As we roll onto our left sides, pretty much every night for the twenty seven years of our marriage the Captain has cupped my breast in his hand.  My left breast.  He did so again last night.  I lay there and sobbed.

Zzzzzz

Sleep

I slept!  Oh I slept!!  John Keats was not wrong you know.  Sleep really is the ‘soft embalmer of the still midnight’, it really can bring ‘forgetfulness divine’ (apart from bizarre dreams on the importance of wearing quality brown mackintoshes.  I mean really?  Brown??  So not my colour, darlings), it ‘soothest’, it ‘Save[s] me from curious Conscience’ and ‘seal[s] the hushed Casket of my Soul.’  Irritatingly, I still woke at bloody hell o’clock (anything before 6:30am) but on this occasion it was at least proper day time and I was feeling refreshed, bright and even breezy.  Though that may have been down to yesterday’s onions.  Goodness, just made a fart joke!  This blog is really bringing out a lavatorial side I did not know existed.  Let’s blame it on the cancer, shall we?  Seems best.  And probably a safer bet than the armed robbery I suggested to the Captain we undertake on the day of diagnosis.  In my head it went like this:

‘But Officer, I only committed this bank heist while the balance of my mind was disturbed.’

‘Completely understandable, Madam.  Allow me to carry the loot to your car.’

The Captain’s version went like this:

‘But Officer, I only committed this bank heist while the balance of my mind was disturbed.’

‘I have it on reasonable authority, Madam, that the balance of your mind is always disturbed.’

I rather fear his would have been closer to the truth.

So there you have it, people.  I have said it before and I’ll say it again: information is power.  For me, it can also bring peace.

Today, I am visiting the Emma Bridgewater factory with one of the Serious Delinquents. The sun is shining.  The daffodils are peeping.  I have read some Keats before 9am.  All is well with the world.  Almost.  Bollox.  Nearly forgot there.

Peace descending

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‘I am confined and cannot escape; my eyes are dim with grief.  I call to you, Lord, every day; I spread out my hands to you.’ Psalm 88

‘Peace I leave with you; my peace I give you.’ John 14:27

I know it is not everyone’s pint of beer, but I love the bible.  I particularly love the poetry of Psalms.  There are many things I take issue with, many things I struggle with and many things that do not make sense to me.  But I do find myself repeatedly back in Psalms.  Today, my equilibrium is more restored than it has been for sometime.  And in cancer terms that means for a few hours rather than days or weeks.  Time has taken on a whole new dimension.

I think my new peace is down to several things.  Mainly, I have the answers to my pathology report that I was looking for.  I believe God has played a large part.  Those of you so inclined might like to look up Psalm 88.  It is a cheery little number.  But I find it so encouraging that I can be that broken and still shout at God about it.  My cancer induced Tourette’s is fine.  God can cope.

So back to that lil ol’ report.  First of all I rang my local hospital to speak to my bosom friend (or breast care nurse).  She was unable to help and initially said ‘This is why we don’t like patients having their pathology reports.  It only upsets them.’  More than a little patronising I thought.  I had legitimate concerns and a right to discuss them with someone knowledgeable.  I only asked for the report in the first place because the cancer charities the hospital had recommended suggested I do so.  Things did improve and she agreed to speak with someone who did understand the report and get back to me.  Which she did.  Their advice?  ‘The bracketed TNM score is irrelevant and nothing to worry about’.  Comforting on the one hand, but on the other, why was it there at all?

While waiting for all this to happen, I contacted Breast Cancer Care to speak to one of their specialist nurses.  I filled in the form, expecting to hear in a few days.  Two hours later I received a phone call.  A calm, professional woman took me through my report in painstaking detail.  She pulled no punches but delivered all with empathy, reassuring where appropriate.  Quite simply, she was brilliant.  Turns out the system for classifying the grade of tumour uses the same acronym as the staging system which I was more familiar with and detailed before.  Only this time T= Tubule formation, N= Nuclear grade, and M= Mitotic rate.  She then sent me a link to an incredibly helpful fact sheet which I intend to give to my bosom friend next time I see her.  Basically, the TNM score on the report was a breakdown of how the grade 3 had been decided upon.  So helpful.

I realise this is not how everyone handles their cancer.  I understand there are many who want to know as little as possible.  But that is not how I function.  I have to know as much as possible – bad or good – in order to stand any chance of keeping ahead of the game.

Having had nearly twenty four hours of not eating (seriously, this loss of appetite thing is new to me … weird), this news at least encouraged me to buy my favourite chocolate (Green & Blacks, milk chocolate with sea salt in case you were wondering!).  I also pulled out the daily flogging mug to drink my new Serenity Tea in – surprisingly pleasant – so I think I’ve covered all bases there.