Best Christmas Present. Ever.

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Tis the Season for giving and jollity and all things festive, is it not?  I have to confess that I have found it a bit tricky to enter into the spirit this year.  My personal festivities have taken a few hits in the recent past: family crisis one year, horrific accident another and then two years ago my Dad died on the 20th December.  Nothing like that to make the whole thing a bit dodgy.  However, Christmas for me is more than a time of family togetherness and sharing.  It is a spiritual festival of deep personal significance.  And this faith was something my Dad shared.  So, as we embarked on Advent two years ago, knowing that it would be his last, we waited.  We waited for the coming of God as a tiny baby; we waited for Emanuel, for God was with us; we waited for the fulfilment of Dad’s faith, for the moment he could hear ‘Well done, good and faithful servant’ (Matt 25 vs 23).  Did this make it easier to say goodbye to him?  Or to miss him any less?  I do not know for I did not experience it any other way.  It was intensely painful.  I missed him then.  I miss him still.

What I do know is that joint faith has made me determined not to miss out on the joy of Christmas.  So I have worked on forging new traditions, creating new memories, savouring new experiences.  But like I said, this year took another hit.  I mentioned earlier that I had been referred for an MRI and a bone scan.  All on account of a bit of back ache and bone pain.  The reality of this is that I was being investigated for secondary breast cancer.  The appointment for getting my results was today.  One day after the anniversary of my Dad’s death and four days before Christmas.  It would be lie to say this did not worry me.  Rationally I knew the odds were in my favour.  But the odds were in my favour last time.

But I can officially declare that joy can be unconfined!  Christmas bells can be rung!  Champagne may be uncorked!  Today I received my results and my bone scan says: ‘no evidence of osteoblastic bone metastases’ and my MRI says: ‘no evidence of bony metastatic disease’.  It is, quite simply, the best Christmas present I could have wished for.  And definitely one for my Jar of Joy!

Christmas may now begin.

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Timing

help

Every year the Captain and I look at each other after Christmas, assess the damage and embark on some form of weight loss campaign.  We have been doing it for nearly the whole of our marriage.  Over the years it has got harder, but each Spring we have lost an average of a stone and a half each.  Consequently my summer wardrobe is generally slightly smaller than my winter one.

This year, the weekend of our annual appraisal was followed by my summons to the Recall Clinic and so on and so forth.  Strangely, this did not affect the diet well.  Initially I did not eat but I have more than made up for that since.  And despite having a kilo of me lopped off in surgery I am exactly the same weight now that I was at Christmas.

This has meant buying almost an entire summer wardrobe.  Not only do I need clothes that fit me now, I also need clothes that are ‘comfy’ as I am assured that most people put on weight during breast cancer chemo.  And then, of course, there will be the difficulty in shedding the excess timber thanks to the delights of hormone therapy.  Lovely.  I am not looking forward to the post chemo diet!

The Circus

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Today I am angry.  I think I am allowed to be.

This summer, the Captain and I had plans.  For some years we had been looking forward to a time when could move onto our narrowboat and travel the canals for six months of the year.  We have been slowly moving towards that goal.  We sold our family home last year and moved into a much smaller, more easily manageable property.  We refitted our boat.  We adapted my jam making business to suit a more prolonged life aboard.  We adjusted our finances.  The Captain began to adapt work, initially taking a six month sabbatical with a view to retirement in April 2017.  We were good to go.

And then this happened.  And the whole Cancer Circus came to town.

On most days I am rational about this.  Sanguine even.  I am delighted that the Captain does not have to juggle work with his need to be with me and my need for him to be here.  But today I am not rational.  I am not sanguine.  I am not delighted either.  I am bloody angry that our plans have been trashed.  This has happened time and again.  And it is not fair.  Not even a little bit.

I know that our plans will keep.  I know that we should be able to continue with them next year.  I know that were it not for modern medicine, my chances of doing them for many years would be seriously in doubt.  But from now on, I will always have a sword of Damocles hanging over my head.  Once a cancer patient, always a cancer patient, as they say.  I can choose to ignore it.  I can choose to live with it.  I can choose to embrace it.  But it will always be there.

And I am angry about that too.

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?

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.

Best Laid Plans

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So remember today’s plan?  Go to clinic; decide on operation; book date; open gin.  It was tempting to reverse that order but no, I thought, best not let them know I’m a gin sot.  No just yet.

Item one on list accomplished with aplomb.  Made it to (still hideously pink) clinic.  Still overachieving in the arrival stakes.  Must work on that.  Getting to a cancer clinic 25 mins early impresses no one.  It was at this point the list went downhill.  Not even Meatloaf sang ‘One out of four aint bad.’

How hard could it be?  I mean seriously, all I had to do was pick a new set of knockers.  Actually, very hard as it turns out.  Reconstructions usually use implants.  Implants are a bit of an issue so we were hoping to avoid them.  The favoured tummy acreage option also presents problems: apparently my vast acreage may not be enough (I have never felt so sad at being told I was not fat enough.  I mean, that surgeon needs to go to Specsavers.  Your life in their hands, sheesh!); it could not be done at the local hospital (this did not worry me as my preference was to go to the All Singing All Dancing Breast Unit up the road); it could all go horribly wrong if I need to have radiotherapy post surgery.

As a consequence, we’d nearly settled on going for the implant option right up until the moment we were told:

‘There is a 10% chance of rejection in the normal population.  In your case we’d expect that to be much higher.’

Boom!  Deal breaker.  Cue wailing and gnashing of teeth.  And that was just the Captain.  OK, I exaggerate.  I did the wailing.  More of a drippy weeping but snot was involved.  There are times I really really hate this whole Partners in Care that the NHS have going on.  I just needed someone to tell me what to do.  And THAT, my friends, is how you know just how awful this whole experience is.  Because how often have you EVER heard me utter such a thing.  And how many people have lived to tell the tale of How They Told Me What To Do, hmm?

Gorgeous Mr Lovely, who we met last week, and while being stunted in the height department was still easy on the eye, began to tentatively take charge.  His boss had laid all the options out but we were floundering.  He reassured us that the seriously dodgy bit (or the grade 3 invasive cancer) of my 52mm crappy area was actually only 6mm in diameter.  This gives us time.  Not much but enough.  His advice was to go to the All Singing All Dancing Breast Unit up the road.  An urgent referral means I should have an appointment by next week.  There I may be offered lymph node biopsy prior to surgery to decide exactly what my treatment plan needs to be.  There are too many possibilities to go into about what may happen but this does feel like the right course of action.

So item two: decide on operation – fail

Item three: book a date – massive fail

Item four: open gin – you’d think this was a safe bet, wouldn’t you?  Inexplicably I did not want gin.  I wanted wine.  I know.  Who’d’ve thought it?

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.

The Great Telling part 3

breast cancer care

During The Telling, many of you lovely people have asked me all sorts of questions.

  • Questions about my cancer
  • Questions about how you can help
  • Questions about my treatment
  • Questions about breast cancer generally

Despite having been thrown into this situation, I feel ill equipped to answer many of them, although I do not mind anyone asking me anything.  I absolutely believe that knowledge equals power so here are links to two fabulous organisations: breast cancer care and Macmillan They both have excellent information.  Do not bother with anything else online, it is only confusing, can be contradictory, may only apply in other countries and could well be wrong.  Save yourself the worry.

There are many confusing and seemingly contradictory things about my own diagnosis that I have yet to sort out but basically I have a multifocal grade 3 invasive cancer.  Besides having a mastectomy, I do not yet know what sort of treatment, if any, I will be subject to.

What I do know is that without the changes to the screening program which dropped the age from 50 to 47, my cancer would probably not have been picked up until too late.  The changes in my second mammogram at 50 were only apparent because they varied significantly from my first one taken at 47.  Had that been my first, it is unlikely that it would have been considered abnormal.

So please, do not ignore requests for screening.

The Great Telling part 2

Man telling an astonished woman some secrets

It seems never-ending.  The telling that is.  Just when I think that I’ve covered everyone, I remember someone else.  It is exhausting.  I have been delegating The Telling.  Friends have been telling others for me which I greatly appreciate.  So please feel free to do likewise.  I will be doing that so very 21st century thing of making an announcement on Facebook next week but I am trying to catch important people before this happens.  If I have missed you it is not because I do not regard you as important.  It is because I am overwhelmed.  And crap at remembering everything.  Frankly it is a miracle I do not go out with sandwiches in my hair, shoes on backwards and with some item of clothing entirely missing.  Oh, wait a minute …

This weekend I am desperately hoping for some much-needed time with the Captain.  We have had no time alone since we sat in a gin bar in town on Monday.  ‘What d’you want to do?’ he asked on our return from the hospital.  I gave my usual response to almost every question, ‘Drink gin.’ ‘Right,’ he said, ‘let’s get pissed!’  And so we caught the bus into Birmingham in order to allow the plasterfication to really be effective.  We howled with laughter, pontificated passionately, and sobbed at intervals.  It was wonderful.  Well, not the occasion that brought us there but as a response to it, pretty appropriate I’d say.

However, since then there has been not a moment to ourselves.  So this weekend we are aiming to have that.  My phone may only be on at intervals.  I am not ignoring you.  Well I am.  But not because I do not want to hear from you.  I do.  Very much.  I just need time.  And there is precious little of that.

The Great Telling

Telling Stories

Yesterday The Great Telling began.  It is not exactly something you can slip discreetly into conversation.

‘Isn’t it a lovely day and oh, by the way, I have breast cancer.’

‘You look fabulous in that dress, d’you think it will work with one boob?’

‘Doing anything at the weekend?  Me?  Oh you know, contemplating breast reconstruction.’

None of these really work do they?

The hardest was telling the children.  I say ‘children’ but they are not really.  Being 23 did not stop my daughter needing to sit on my lap and sob though.  Nor did it stop her needing to be held in the pouring rain after she fled the restaurant.  Our tears added to the general wetness.

By the end of the evening, our roles were reversed.  My lack of sleep, general anxiety and feelings of utter crapness caught up with me and I could no longer hold it together.  As I broke down, my beloved 23 year old stood with me while my darling 22 year old sat by my side and they both held me.  They were strong for me.  It was a precious moment.