Inhabiting the Grey

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I have spent a lot of time in grey areas of late.  Which is more than a little annoying.  I am normally good at making my mind up.  I am decisive.  Definite.  Prone to jump to conclusions, even.  I do not do shilly shallying.  I am deeply impatient with those who cannot make up their minds.  I hate indecision.  I despise wishy washy.

So it is ridiculously ironic that I am being visited by a cancer than simply refuses to make up its mind about how it should be treated.  First it was multifocal.  Then it wasn’t.  Next it was a 52mm tumour.  Then it shrank to 15mm.  At one point I needed a mastectomy.  Now it seems I did not.  My first pathology suggested chemo, the following one was less sure, and the lack of lymph node involvement implied no chemo at all.  And now, the oncotype dx test, which was supposed to shed light on what happens next, has provided us with as much clarity as your average puddle.  How naïve it now seems to think that I thought I would have a diagnosis and treatment plan back in February.

Brainy Spice rang me this afternoon.  This impressed the heck out of me.  Just to remind you, today was a day the Junior Doctors were striking (Note to self: check clinic dates against strikes and take muffins for picket line).  This woman will have been run off her feet because she will have been covering for her junior colleagues.  Under no circumstances can phoning me have been said to be urgent.  I was not expecting to be called until tomorrow at the earliest; it was not life threatening; and it could all have been put aside for a later date.  And I would have completely understood and supported her if that had been her decision.  However, like every doctor I have so far encountered at this hospital, she went beyond what was necessary and did everything she could to the best of her ability.  We are so lucky to have such an amazing NHS, I sincerely hope we still have one in future years.

Anyway, that was a digression.  I will park that high horse and get back to my results.  My Recurrence Score has come back as 28 out of 100.  Sounds good at first, doesn’t it?  However, less than 18 means that chemo is definitely not required.  Higher than 30 means it definitely is.  Scores in between are less clear.  Generally, if score in this intermediate group, chemo is not considered helpful as it makes little, if any, difference.  Of course, just to be awkward, my score inhabits the top end of that range which makes is even less clear about the chemo option.  Fuck.  Sorry.  Slipped out.

On the upside, I have been referred to THE most amazing oncologist.  Possibly in the world.  I have known him for about twenty years and loved him for much of that time.  He is a tremendous man of God who played a part in my son’s life during many difficult years.  As he has always been known in our household quite simply as The Doc, that is how I shall refer to him.  So the next stage is an appointment with The Doc, hopefully next Wednesday.  I trust him implicitly but really hope he can give us some guidance.

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Lies, Damned Lies and Statistics

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Yesterday I had my first session of reflexology.  It was A.Maz.Ing.  I floated out of the room with my feet supported by pixies carrying them on little pillows of air.  Seriously.  I did.  I then loafed around on the sofa, went to bed early and slept the sleep of the innocent.  Never let it be said I do not know how to live.

This whole day, despite being full of very little, provided me with almost twenty four hours of not thinking about my results.  You see, try as I might, practised as I am, I still spend much time pondering them.  I try not to.  But they sort of sneak up on me.  I may be immersed in an episode of Downton Abbey only to be confronted with Mrs Hughes, the housekeeper, anxiously waiting for results from a possible breast cancer.  Excellent.  I had forgotten that wee story line so it was delightful to be reminded of it.  And then I can be doing something utterly unrelated and find myself inadvertently repeating ‘69% survival rate at 5 years’.  Brilliant.

But on that score, at least, I have news.  In the spirit of all things being proved or disproved with statistics, I have been doing some digging.  The Nottingham Prognostic Index which scored me at 4.3 and gave me the aforementioned 69% chance of survival, is pretty ancient these days.  I do not know how accurate it is.  I suspect it still has credibility as it is still being used.  However, I am preferring to go with the Predict tool which gives me a much more acceptable score of 94% chance of survival at 5 years and 85% at 10.

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This info is based on the pathology report from my mastectomy.  There is much that is confusing regarding my original results as the initial diagnosis of multifocal cancer seems to be very far from the truth.  I am beginning to suspect that my results were muddled with someone else’s.  Which is more than a little concerning.  What is certain is that all of the cancer (a grade 2 tumour of 15mm) was removed.

All of this makes it tricky to predict anything, and anyway, is anything certain?  Except God.  And once again I am back with Teresa d’Avila: ‘God never changes … those who have God find they lack nothing.  God alone suffices.’

To chemo, or not to chemo, that is STILL the question

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Today was going to be all about results.  I have been building up to it for sometime.  In fact, as a very wise person observed, I should be due a PhD in Waiting by now.

I began the day in a pretty chilled state: breakfast with a friend; my new Wonder Woman pants; general busyness occupying my mind.  I interspersed all this with reflections on Psalm 25 and occasional sniffing of my nose stick.  Our time for leaving for the All Singing All Dancing Breast Unit was just after 1pm, so sitting down to lunch at 12:30 I was still calm and collected.  Five minutes later, all this was undone.

At 12:35 the phone rang.  It was the Local Breast Clinic.  That’s right, the one I had been referred on from:

I am ringing to tell you that now we have your results we’re requesting oncotype testingpromise you, at that moment this meant as much to me as it does to you!

Sorry, did you say you’ve had my results?

Yes, we need to treat you as a Grade 3 tumour patient even though the histology showed only a Grade 2 tumour removed.

But I’m not under your care anymore.  My understanding is that I am under the care of the All Singing All Dancing Breast Unit.  I’m going there in a few minutes to get my results from them.

Oh no, that was only for your surgery.  You’ll be back with us for any further treatment.  Anyway, your results are …

And she proceeded to rattle through my histology report.  Over the phone.  Having heard me explicitly say I was about to go to an appointment to discuss them.  To say my composure was disturbed is an understatement.  So much so that I rocked up at the All Singing All Dancing Breast Unit with my cardigan tucked into my knickers.  My fabulous Wonder Woman pants as already mentioned, but even so.

My first appointment was a brief trip to the dressings clinic just to check out my wounds which are now looking good enough to leave undressed.  Thereafter it was my appointment, the big one, with Brainy Spice that was the focus.  I had already tipped them off about my phone call from the Local Breast Clinic.  They were gratifyingly enraged.  Brainy Spice had written with my results requesting further information, which had not been forthcoming, but at no point had she suggested they discuss this information with me.

Anyway.  My results are annoyingly not clear cut.  There is Good News.  There is Not Such Good News.  And there is Wait and See News.  The Good News is that they removed a 15mm Grade 2 tumour and there was no sign of any other cancer.  It had clear margins suggesting it has completely gone.  More Good News is that radiotherapy is not indicated.  Hurrah!  Even more Good News, there is no sign of the Grade 3 cancer found on biopsy.  The working theory on this is that it was entirely removed during the biopsy.  The Not Such Good News is that the mere mention of the Grade 3 tumour immediately effects my long term prognosis.  This is assessed with the Nottingham Prognostic Index (NPI) and I have scored 4.3 based on my tumour size, grade and lymph node involvement.  A score of 4.3 means I have a moderate prognosis, or a 69% chance of survival at 5 years.  Frankly, that seems a bit crap currently.  The other potentially Not Such Good News is that the size of the tumour means that I may not have needed a mastectomy at all.  It was considerably smaller than originally assessed and a lumpectomy would have probably sufficed.  However, I am fairly sanguine about this.  I am quite glad to be rid of the whole lot.  Whether I always feel this way remains to be seen.

The Wait and See News is that the need for chemo has yet to be decided.  Because my histology falls into a borderline category, my tissue will be sent for oncotype testing.  This involves being flown to America.  Perhaps I should have offered my Wonder Woman pants as a courier service?  Two weeks later, the results pop up over here.  They will indicate whether or not chemo would be good idea.  The higher the score the more likely chemo is.  More tests come back with low scores so that is something to hang on to.

So now I am back to waiting.  You really would think I’d be good at this by now?

Still fretful

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I think it is still reasonable of me to remain concerned.  Thursday’s news is in no way less fabulous but reality was always going to rear its ugly cancer ridden head again.  You see, I still have cancer.  As yet, no one has had a good look at it.  And it is far from removed.  Therefore there is much that is unknown.

What I do know is that there are three separate cancerous areas within one quadrant of my breast.  The worst offender, the ductal grade 3 (aggressive and invasive) of no specific type (common, in other words.  How rude!), is close to my chest wall.  Until I am operated on, we do not know how much of a problem that will be.  To be removed successfully there needs to be a clear margin of healthy tissue around the cancerous cells.  If the cancer is already on the chest wall, this will not be possible.  It would immediately throw me into stage 3b, defined as ‘the cancer is fixed to the skin or chest wall with no cancer cells in the lymph nodes under the arm’.  And there are only 4 stages.  In this game, points do not mean prizes.  Stage 4 is terminal.  So going straight it at 3b would seriously piss me off.

By committing all this to the page, I am sincerely hoping that it is going to leave my brain free to think happy thoughts while I work up to sleeping.  Or at least while I work up to Lying In Bed While The Rest Of The World Is Sleeping.

All Clear!

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They rang me!!  I just had a phone call from the All Singing All Dancing Breast Unit.  They had my results.  No cancer cells in my lymph nodes.  None.  I cannot begin to tell you what good news this is but you can probably work it out.

This should mean that I do not need chemo or radiotherapy.  Just a whole pile of surgery.  But from where I am standing, that is more than ok.  First up is the Lop-It-Off-And-Rebuild-A-Wee-One operation now scheduled for the 21st March.  Eleven days and counting.

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.

Bedtime Reading

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Once upon a time I was considered quite bright.  Once upon a time I knew how to go to bed.  Once upon a time I understood about ‘Sleep Hygiene‘.  Once upon a time I would have never have considered reading inflammatory material just prior to retiring.  Oh, wait.  Who am I trying to kid?  That really is all a load of balls.  Pure fantasy.

Truth: I have always been crap at sleeping.  Last night I took it to new lows.  Do not be fooled by perky posts and jovial writing.  Let no one believe this is a barrel load of fun.  When I am not laughing I can usually be found in a slimy pool of snot, tears and shredded tissues.  And for the record, I am NOT brave.  I am just trying to make sense of this crap the only way I know how.  And another thing.  You do not know that I will be alright.  No one but God knows that.  I am doing my damnedest to trust in him but that is not easy.  Especially as much of the time I’d quite like to say ‘Wtf, God?’  Thankfully, I believe in a God of forgiveness.  Heaven knows he has had much practise with me.  I am delighted you are praying for me.  Thank you.  Please please please do not stop.

I digress.  Last night.  Sleeping.  Or the lack thereof.  Having spent much of the evening wailing (I couldn’t even eat tea!  Now there, right there, is evidence, if ever you needed it), the Captain (O Captain, my Captain!) managed to distract me masterfully with a game of Carcassonne.  I even thrashed him.  Again.  I really love that man.  So newly perked up, you would think I would quit while ahead and retire quick smart?  Nooo.  Like I said at the start, once upon a time I was considered quite bright, but how stupid to decide 21:00hrs was the perfect time to start to decipher my biopsy pathology report.  Yeah, like that was a good idea.

It has been a while since I did anything medical but I can still read some reports and more importantly, I generally know where to go to find the information I inevitably do not know.  What scared me shitless (and those of you who know me well will know I am so ridiculously uptight I would rather say fuck than anything pertaining to shit so there is yet more evidence that all is not well chez nous) (or bateau nous) was the following:

‘Malignant lesion

Type: No special type (ductal NST)

Invasive grade: 3 (T3 N3 M2)

I went to bed with that flashing before my eyes.  T3 I knew about (Tumour grade 3)  but the other two N= nodes and M= metastases and those numbers are not good.  Not good at all.

A long night following.  As is often the way, some sense returned with the daylight.  I would say sun but it is February.  This report does not compute.  In order to make this score, lymph nodes HAVE to be biopsied.  Mine have not been.  There has been no talk at either of my appointments of spread, lymph nodes (other than that they are beautiful) or this score.  If this score was accurate, I am not convinced any fannying around would be going on.  I rather suspect we would be back to the lop ’em off, fill with poison plan of action.  So today, I am trying to get hold of the hospital or someone in the know to make sense of it all.

What larks, Pip, what larks!

Hormones, or their lack

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These are the last hormones I should have taken.  I flushed them down the toilet on Monday evening.  My cancer is hormone receptor positive (with a score of ER7/8) so I have to eschew all things hormonal from now on.  I think this may turn me into a crazed beast.  Ideally, when coming off HRT one gradually reduces the dose over a couple of months.  But when was I ever ideal?  Coming off abruptly can lead to all sorts of permanent issues apparently.  Oh goody.