Queen of the Road

driving

It has been an age since I sat behind the wheel of a car.  Since before I embraced blue tits and had my sentinel node biopsied.  Which is really quite a long time ago.  My instructions from the hospital forbade me to drive for at least four weeks following my latest op.  However, since it was my left side that has been carved up, it was thought wiser to leave it a little longer.

Today I decided enough was enough.  I had a little jaunt planned.  Just the delivering of some jam to a National Hero.  And a wee trip in search of an egg basket.  It was not much.  But it was exciting.  You see, I do not get out much.

It was going well.  Forward was fine.  Right and left were also good.  Speeding up and slowing down, no problem.  Backwards was more of a challenge but I had little call for that.  Once the gear was in reverse it was ok, just getting it there was a tad tricky.  Still, I figured, I could just keep going forward and all would be well.  The trouble came when I was half way round Sainsbury’s.  I hit the exhaustion wall.  It was all I could do to put one foot in front of the other and get back to the car.

I ate some sandwiches, had a little doze, then drove home again.  Carefully.  Possibly a little much for my first day out but, man, it felt good to be independent again.

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Measuring Up

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As I am deficient in the breast department to the tune of a half, I am going to be visiting the Prosthetic Clinic next week with a view to being balanced up.  Amazing, a clinic designed to bring balance into my life.  World peace may also be on offer or perhaps I am expecting too much?

In order to prepare for this event, I needed to be fitted for a bra.  I have done this many times.  I am not sure I have ever enjoyed it.  Today’s experience, while as good as it could possibly be, was right up there with the worst of them.  Actually, cancel that.  It WAS the worst.  During none of the others have I sobbed in the changing room.  The fitter was lovely: kind, professional and good at her job.  I could not have asked for more.  The reality of buying the hideous sort of bra my grandmother would have considered conservative just felt a bit much.

But the deed is done.  And on the upside the VAT got knocked off as a perk for having cancer related surgery.  And on another upside, I rather suspect it will be quite comfy when I eventually get to wear it.

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.

’72 baps, Connie, you slice, I’ll spread’

Victoria Wood
‘In India if a man dies the widow flings herself onto the funeral pyre … in this country the woman just says ’72 baps, Connie, you slice, I’ll spread’. Victoria Wood

I am so sad at the news of Victoria Wood’s death.  I feel I have grown up with her.  My life events, or at least the fodder for her stand up routines, were often only a step behind hers.  She was twelve years older than me.  Her children were born slightly later than mine but by the time she was using her experiences in stand up routines I had recently qualified as a midwife and then shortly after become a parent.  She made me feel it was normal to be so disorganised as a new mum that wearing toast in my hair was acceptable.  Which made me in turn, feel better about putting the fabric conditioner in the fridge and milk in the washing machine.  And almost better about leaving my then non-crawling eleven month old sitting on the roof of the car as I took the handbrake off and was about to drive away. Almost.

I careered from early parenthood straight into early menopause so was right on track once again for Victoria’s routines.  I did go down the HRT route but during the six months it took to get the dose right I had also had a Natural Alternatives to HRT book and felt like a six foot budgie as I chowed down vast quantities of indigestible seeds.

I have always felt a close affinity to her.  She made me laugh in a way that other comedians just did not.  I do not know whether it was her wit, her Lancashire roots, because she was a woman, because of her supreme talent or a combination of everything.  That she died too young from cancer has affected me more than I care to admit.

Rest in Peace Victoria, and thank you for laughter.

Nipples Aloft!

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The keenly observant and nerdy among you will have a spotted a reference to the Archer’s there – one I have been dying to use but have had to wait until now!

This weekend the Captain and I had a long standing weekend planned with my bezzie mate and husband to celebrate both the men’s birthdays.  It was not at all clear whether I would be up to it but having already paid in full, I was loathed to waste the opportunity.  So Friday saw us set off with the car heavily laden with pillows, hot water bottles and other items that have now become essential equipment.

It is entirely possible that if I had realised just how arduous I was going to find the four hour journey, I may never have begun it.  My shoubsicle has reduced in size considerably as the swelling has decreased.  It is now far less rigidly stuck to my chest and has a great deal more mobility.  Given that I am still in less than supportive bras, this makes bumpy roads something of an ordeal.  They are an ordeal at the best of times but with the number of lacerations I have healing over my newly soft and bouncy mound, there was a great deal of wincing going on during this journey.

However, the treehouse that awaited us was delightful.  Set in peaceful and idyllic countryside we had views of rolling hills, woodland and a meadow.  A peacock and two peahens were very fond of our balcony and deer were spotted in the woodland.  We did very little during our time away.  Saturday was spent admiring the view, which could be seen from bed, while watching back to back episodes of Downton Abbey.  We managed a brief meal out in the evening but that was all.  On Sunday a trip to the seaside involved fish and chips on the sea front.  On the whole, it was probably a bit too much too soon, but it was lovely to be somewhere different, with a different view and to spend it with one of my oldest friends and definitely worth it.

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?

Pants

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Carrying on the superhero theme from the other day, a pretty spectacular friend is giving me these for my appointment tomorrow.  Wonder Woman knickers.  My life will be complete.  In my excitement, I showed the photo to the Captain.  ‘They’re a bit skanky,’ he said.  Rude.

Perhaps he did not realise that wearing them will make me feel like a superhero.  If I get bad news tomorrow, then these pants will make me feel invincible.  If I get good news, then they will enable me to fly around the world in celebration.  Obviously.  Either way, they will provide the medical establishment with a good laugh.

Stepping out

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Yesterday I took to the streets.  Alone.  It was time.  With a few notable exceptions, I have been imprisoned within the four walls of my house for three weeks.  Actually, I am lying.  One week in hospital, two at home.  Please stand corrected.  Whatevs, it has been tedious at times.  Last week I decided that by Monday I would be well enough to walk round to see a friend.  On.  My.  Own.

My excitement was already beginning to mount as I sorted out my clothes.  Much thought went into which scarf I would be wearing.  I settled on the white with red poppies.  I even spurned my post op chic leggings and opted for a skirt.  Obviously still with elasticated waist.  Having crossed into comfort wear you cannot expect me to leap back to normal attire in one bound.

When the time came, I sorted my pockets – handbag carrying not yet a comfy option – locked the front door, and set forth.  It was barely a quarter of a mile, but still, I went.  Alone.  Sweet freedom was mine!

And on arriving at my friend’s, I did not collapse, panting in a heap on her hall carpet.  I sat in her living room, sipping my mint tea, making polite conversation like the lay-dee I am.  And then I spotted my fashion faux pas.  My tights.  In my dim witted state I had donned a pair of navy blues.  Black boots, black skirt, navy tights.  I really should not be let out alone.