Unexpected Joys

meds

Today I saw The Doc again.  This was a surprise.  I was not anticipating the pleasure of his company until October next year.  However, I have been having one or two issues … plain sailing was never going to be on the cards, was it?

Yesterday I rang the Breast Care Nurses as I wanted to check the procedure for changing the osteoporosis meds I am on.  Since taking them, I have been experiencing fairly constant indigestion and on one occasion, spent the day throwing up.  I am such a class act.  My GP is already on the case but I wanted to be certain that I would be referred to the same hospital.  In passing, I mentioned the pretty much constant back ache I have had since my diagnosis back in February when I slipped a couple of discs.

BC nurse: ‘I’m sorry?’

Me: ‘Erm, I’ve had backache since February …?’

BC nurse: ‘And you’ve not been scanned, have you?’

Me: ‘I had a DEXA scan.  But that’s not what you mean, is it?’

BC nurse: ‘No.  I think an appointment with The Doc would be wise.  Tomorrow?’

Me: ‘Wow.  Er, yes, fine.’

It is not exactly something you refuse, is it?  So today, I was back in clinic, sitting opposite the chemo unit, watching the time tick by, waiting once again.

As always, The Doc was lovely.  He has instructed my GP to refer me to the Osteoporosis clinic for six monthly injections (sub-cutaneous or IV, the jury seems to be out on that) and prescribed me variations on the vitamin D and calcium supplements I have to take.  I am being sent for an urgent MRI and bone scan.  Which means sometime in the next four weeks.  We will then reconvene to discuss the results.  He was alarmed by my backache which was disturbing.  ‘I’m 99% certain it’s my discs & osteoporosis,’ I said.  ‘Yes, yes,’ he mumbled in reply.

Neither of us mentioned the other possibility because no one wants to think about that.  So it sat there in the middle of the room, drawing attention to itself, like the embarrassing drunk at the party that no one wants to acknowledge.  Hopefully, by my next appointment, it will have sobered up and in the cold light of results, will have vanished like a distant hangover.

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.

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.’

Bored

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I have hit that stage in my recovery when I am neither one thing nor the other.  I am not ill enough to take to my bed, yet I do not have the concentration to focus on reading, let alone the stamina for much in the way of entertaining.  I am not well enough for fun packed day trips, yet am yearning for a change from my four walls or the energy to manage an outing to the cinema for example.  I am well enough to wake feeling I can take on the world and then half an hour into doing so, realise that I am actually still ill and cannot complete whatever portion of world taking on I have begun.  I am not so ill I that I need waiting on hand and foot yet not well enough to manage to cook a meal.  Yet.

I do have the occasional frisson of excitement/anxiety/chest-chrushing-breath-stealing-panic as I remember that I am still waiting for the yay or nay regarding chemo.  That is not my idea of fun though.  And it does not even help to pass the time.  Instead, it leaves me high on adrenaline, dripping in sweat, while time has seemingly stood still.  Nice.

I have managed to go out most days.  But today, for example, I had 3 guests for about 30 minutes and then went with Mum to the supermarket for a few groceries.  The shopping trip took no longer than an hour.  That brief spell of entertaining and negotiating Morrison’s (*shudder*) has wiped me out.  I am now fit only for resting.  And it is dull.  And I am bored with it.

Everything is healing as it should.  My scars are looking more scar-like and less gaping wound-like.  My shoubsicle has de-swelled almost completely and the bruising is now just a faint blush.  The Captain is delighted with the scar arrangement on it as it looks like an anchor, he says.  He has a warped imagination, I say.  But I am pleased he approves.  I am still tender in all manner of places but the stretching is helping with that.  I have added to the I Must, I Must, I Must Improve My Bust Exercises and am now doing the full range of movements.  I can nearly hold my arms vertical above my head.  Certainly enough to surrender should the need arise.

But be all that as it may, it is still dull.  And I am still bored.  And I dislike that very much.

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

trip to hospital

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?

Tick … tick … tick …

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Funny how I cannot sleep?  Must be something on my mind?  Actually, it is not the something on my mind.  Rather the something I need to get off my chest.  Currently I am acutely aware that it has been forty seven days since my biopsy.  Forty seven days since it was decided I had three different types of cancer.  I have been holding onto the relative small size of the grade 3 invasive area.  It had been a source of comfort to me.  Tonight, in my imaginings, it has grown.  It is now the size of a small country.  Something in the region of Wales, I am thinking.  I have visions of cancer cells, built like Welsh miners complete with hard hats and pick axes, stampeding all over my breast, hacking the healthy tissue to pieces, laying dynamite charges and then standing by while the blast takes over.  I am aware this is not rational.  But it has been a while since the totally irrational (yet very vocal) side of my brain made her presence felt.

And so, here I am, at two o’clock in the morning, sitting downstairs in the semi dark, thinking dark thoughts and trying to exorcise them from my head.  Whatever has happened during the past forty seven days, I can do nothing about it.  It is hard to put aside my worries.  I have to hold onto the facts I know: I have no lymph node spread – this is very good; whatever is found on Monday, it has still been found early – this is also very good; I am in good hands – the NHS, my fabulous friends & family and God.

So to try to shut up Miss Vocal and Irrational, I am still reading Psalms.  I think I shall be for a long time yet.  So much feels applicable.  I know it is not what the psalmist intended, but for me, the enemy is cancer.  Those who oppose me are cancer.  Those who gloat are cancer. You get my drift: all opposition is cancer. Yesterday I read the following:

Psalm 35

22 Lord, you have seen this; do not be silent.

Do not be far from me, Lord.

23 Awake, and rise to my defense!

Contend for me, my God and Lord.

24 Vindicate me in your righteousness, Lord my God;

do not let them gloat over me.

25 Do not let them think, “Aha, just what we wanted!”

or say, “We have swallowed him up.”

26 May all who gloat over my distress

be put to shame and confusion;

may all who exalt themselves over me

be clothed with shame and disgrace.

27 May those who delight in my vindication

shout for joy and gladness;

may they always say, “The Lord be exalted,

who delights in the well-being of his servant.”

28 My tongue will proclaim your righteousness,

your praises all day long.

 

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.

And so it begins …

surgery

Tomorrow is quite a big day for me.  It is the day it all begins.  Although it is going to result in more waiting.  What with all the practise I am getting, you would be forgiven for thinking I was getting good at that.  Waiting I mean.  Psalm 40 is all about waiting and is a bit of a personal fave of mine.  Except I have never done anything patiently.  Especially waiting.  I live in hope that God will overlook my disinclination to patience and still turn and hear my cry.  Maybe if I continue to sing endlessly like U2 I’ll get somewhere, no?  Then again, perhaps you should all take pity on both me and God and do the crying out on my behalf.  I seem to get no further than ‘Oh God’ at the moment.

Very shortly I shall be taking myself for an extra bath.  ‘But wait,’ I hear you cry, ‘surely it is not your birthday?’  Indeed it is not.  But extra cleansing is called for.  You see I have a list.  And on my list it tells me ‘to shower or bathe from head to foot the night before your operation’.  It did make me wonder if people really do manage to shower or bathe without including their feet.  I mean, just how athletic would you need to be to bathe/shower from the neck down to your ankles but not get your feet wet?  My mind is boggling at the contortions of the ablution avoiding public.  Having done this I must stay clean.  So no games of tag rugby in the dark then, damn.  Tomorrow morning I must get up at bloody hell o’clock to repeat the process. And presumably avoid rolling in oil slicks before arriving at the hospital.  I won’t lie to you, it is going to be tough.  But clean I shall stay.

So tomorrow then.  It is Sentinel Lymph Node Biopsy Day.  I shall arrive at hospital for 7:30am.  Actually, given my propensity for overachieving in the promptness stakes, I will probably be there well before then.  After that, it will a brisk step along the corridor to Nuclear Medicine for them to inject my breast with radioactive liquid.  Yes, I said inject.  My breast.  Oh goody.  That will be lovely, won’t it?  They say the amount of radiation is similar to having two mammograms’ worth so not enough for the Greenham Common Women to start picketing me.  Thank the Lord.  I would always have been happier on their side of the fence than the other.  After that, I am left to drain.  Well, my lymphatic system is left to drain.  I do not think I actually need to do anything to assist in this process.  I had wondered if some sort of ceremonial chanting was in order, but apparently not.  It happens all by itself.  The radioactive liquid works its way from my breast, into my lymphatic system and then drains into my lymph nodes.  The sentinel node is the first one that is reached.  It is different for everyone but by just removing that one it is possible to see if my cancer has spread.  Because if it has spread anywhere, it will have spread there first.

Once enough time has passed, I will be hopped skipped and jumped along to theatre for a general anaesthetic.  Once asleep, my breast will be filled with blue dye.  I kid you not.  Blue.  So I really am going to turn into a blue tit.  Be careful what you wish for people!  This is to show up sentinel node which will then be whipped out.  If anything else node wise looks a bit dodgy, that will be scooped out too.  Thereafter it is just the small matter of recovery.  Simples.

But it is a big deal.  Because while I will not know it for more days/weeks/I-do-not-know-how-long this minor procedure will map out my coming year.  And that is scary.

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.