BALDILOCKS

Seventy-one years ago I lost my hair to ringworm. My next Chemo is, I am told going to loosen my hair. Thought it was apt to re-post.

For Christmas, in the 'Ringworm Year', the older girls decided to put on a play. It was to be Goldilocks, and the second smallest girl was chosen to play the heroine, mainly because she was able to fit into the Bear's 'beds' [three laundry baskets] but also because she had golden hair.

I watched all the rehearsals, and knew all the words by heart, except for the Goldilocks part. She had nothing to say. All she had to do was to come on stage, try the porridge on the table, then go to the baskets, try the big one, then the middle one and finally, fall asleep in the smallest. Then, when the three bears came noisily home, she had to sit up and stretch, see the bears and run screaming to the front of the stage where Mr. Diamond would lift her off and she would go running through the audience, out of the door, along the corridor, around the corner to the 'stage' door and back on the stage for the final bow.

All was going well until Goldilocks fell ill; three days to go till Friends of St. Edith's arrived for their annual feel-good night. Eventually someone suggested that, I might do. As soon as they all finished falling about laughing they realised that they had no choice; it was the squeaky voiced bald girl or no-one.

One of the nuns made me a bonnet out of stiffened card and crepe paper tied beneath my chin in a big bow, and yellow wool was stuck in curls next to my face and down the back. In my pink borrowed dress and the blue bonnet I thought I looked very pretty .

The evening of the concert arrived and the hall was filled with the great and the good and the show began.

The Grand Old Duke of York came on with four of his ten thousand soldiers and marched to the top of the hill [two benches] and marched right down again. Someone played the piano and carols were sung and then it was time for the Piece De resistance.

The three bears tramped on stage, did their bit with the porridge, decided to go for a walk and exited stage right.

My cue; I climbed on-stage and smiled at the audience to a chorus of oohs and aahs. Slowly I sampled the father bears porridge and made a huge grimace and much fanning of my mouth to indicate how hot it was...then mother bears...ugh! nasty and cold. Baby Bear's was just right and I scraped the bowl clean; [they were all empty of course, but a great bit of acting don't you think?]

Then over to the baskets..er...beds, jumping into each one and making a great deal of business over the whole thing, ignoring the 'hurry up' gestures of Sister Moira. Finally I lay down in the baby Bear's basket, yawned hugely and closed my eyes. Almost at once the three bears came home. 'Whose been eating my porridge' said father bear, and I nearly shouted 'Me!' Then Ma bear said the same thing and I stuffed my fist in my mouth so that when B.Bear accused someone of eating his all up, I simply kicked my legs in the air, to the delight of the audience who hadn't known they would be seeing farce.

By the time they reached the baskets, true fear was setting in...whoever had done the Bear's make-up was very talented; black fur was stuck to the girl's faces and hands and false sticky up ears all added to the illusion. 

I managed to hold out till baby bear shouted '...and there she is' before jumping out of the basket, running to the edge of the stage into Mr. Diamonds waiting arms. Unfortunately, in my zeal to escape from the grizzlies and because Mr. Diamond could hardly see due to the tears in his eyes, we managed it badly, and my paper hat's ribbons tore

Aided by the wind of my flight the bonnet fell backwards exposing my very, very bald head.

Now the hall rocked with laughter as I ran down the aisle and out of the door at the end.

But my trials were not yet over. I knew that with my leaving the stage, the bears had nothing much to do and the play was over. I had to get to the stage door and take my bow with the other girls.

At the end of the corridor was a door I had to pass.  It was open and I could see, walking up and down inside, a tall fat man with a long white beard, wearing a bright red coat and trousers. He looked very fierce and I was terrified, turned to stone.  I could not go back into the hall, nor could I pass that door.

It seemed like a very long time before someone came to look for me, and when I explained, for some reason fell about laughing all over again!

IMPRESSIONS

THE NHS IS FANTASTIC

THE NHS IS FECKED

CHEMOTHERAPY IS A DODDLE


CHEMOTHERAPY IS GOING TO BE HARD


IF I AM THINKING ABOUT ORDER OF SERVICE  CELEBRATION, AM I BEING SENSIBLY PREPARED OR FATALISTIC?


BEEN ASKED DO I WANT A DNR ORDER...HMMN!


ACTUALLY FEELING PRETTY GOOD, SEEMS LIKE THE FECKER DOESN'T MUCH LIKE WHAT  I'M SHOVELLING DOWN.


IF ALL THE CHARITIES, GOVERNMENT  DEPARTMENTS, ETC.SENT  THE PEOPLE THEY SAID THEY WOULD TO HELP ME, I WOULD HAVE TO MOVE OUT TO MAKE ROOM FOR THEM. AS IT IS HELP HAS ONLY JUST STARTED TO ARRIVE...HEAVEN ONLY KNOWS HOW WE HAVE MANAGED...BY WE I MEAN OF COURSE MY GLORIOUSLY ABLE JP.

TKMAXXIMAMA

Been a bit hectic the past few days...and three full days of tests and interviews to come and of course the start of my fight back on Friday so it is fun for me to go back a little bit and tell you about the few hours I spent last Thursday before the big decision; with NOAOS and my darling daughter in law whom I shall call the PLP [perfect little package] and their...er dog, Harry.

He decided to kidnap  me, did NOAOS...bit foolhardy really, as he had not fully considered the logistics of the operation, but kidnap me he did.  Didn't pack a bag...just me a bit fed up with, well being not me...Oxygen tank was stowed in the boot [next to the petrol tank,] I know..what were we thinking?] We did take my meds, but not new sleeping tab. and that set the scene for the rest of  the adventure.. a sort of  'suck it and see' few hours.

Not only did he, I, not consider the implications, he didn't confer with the PLP either, nor could he get to her by Mobi or landmine as it was the very day she had interviews scheduled and would not be home till late.

Ni modo. I am installed, gas tank to hand...and we both look a little askance. He dials the PLP shakes the machine...makes me coffee. And as it is the worst coffee I have ever tasted we get over the hump of [what to do with mum now I've kidnapped her] by dissecting and diagnosing the various methods and machines and cup thickness's before deciding I'll have instant.

I am to have their bed...it is a lovely big comfortable bed but it is their bed. I don't argue. As I am actually in my nightshirt, cunningly disguised as a mini skirt by the sweater I pulled over it...there is little to remove and once in bed I relax. We do what we do best he and I, talk...a lot...about just everything.

Eventually the PLP comes home and, seeing  me there does not turn a hair but hugs me home and makes supper.

And so to bed...I take two Co-codomols in lieu of my sleeping tablet but they don't work; sleep has eluded me most nights and I wait for the dawn before nodding off for an hour or so... viscous circle really, I don't sleep ergo I won't sleep and then I don't. This did not mean that I spent the night alone...no no I spent the night whispering and giggling and re-counting and promising, making memories for him to keep and me to guard. The PLP slept well and was up and out of the house by seven. NOAOS and I were drunk on our sleep deprivation.

After a great cup of coffee and nice crispy toast we both collapsed on the sofa's and I believe nodded off for the fraction of a minute till I sparked up:

'Do you know what I would like to do...really like to do?'
'ER, No..but .within reason maman, or even not, as that would be a challenge.'
'I should like to go to TkMaxx, today, this morning, now.'
'It is only 7.20 Ma...the Mall is closed.'
'Okay...we'll wait.' But fired up now as my meds are kicking in.' I know...let's take Harry for a walk.'

I haven't mentioned Harry because, as a rather special and unusual dog he really deserves his own post but I'm a bit greedy and these are mine so  he has to share. He is a Yorkie. not one of those fluffy tiny toy York shires which curl up quietly in your pocket and everyone goes gaga, but one of the longer legged variety which can, at any given moment look like a cheeky cartoon with one ear and paw up and the next like a Griffon.
Any hoo...Harry sleeps under the duvet and he did, it was so comforting and we did alright until NOAOS crept up to see if I had slept and woke Harry up who rightly saw him off.

It turned out to be a very short walk...twenty yards tops, before we had to come back.

'I  Wonder if they have wheelchairs.?' I think it was I who said those words and heard them come back to me...wheelchair...wheelchair!
No sooner said than done and NOAOS is on the net enquiring. Mall opens at nine...chair can be hired from Motobility..
We throw ourselves back on our sofa's and wait.

Nine twenty and I am ensconced in my smart wheelchair. I look rather like an ancient teenager in my leggings faux mini skirt, zippered top and, if NOAOS had his way, a beanie hat. We prowl through the doors of my favourite shop and I drive forward, catching at cashmere...snatching at silks, fondling footwear, and nuzzling knitting. We do well in TK...but it isn't enough. I am so revelling in this unexpected adventure that I want more...so it is six nighties in Peacocks and Coffee and Croissants at Costa and then, well, a little sense prevails and we make our way back home, [with the Oxygen tank nestling between my legs: what a way to go!] to the sense and sensibilities of what is painfully obvious but which we managed to forget for 14 hours.

I have plans though...one day when I'm feeling OK, and everyone is down here..we are all going to the Mall and we are going to TKMaxximama till we're done.

THE LADY FROM ONCOLOGY SHE SAY:

YES

THUS AND ALSO SPAKE ZARATHUSTRA

What I am doing here today my lovelies is apologising.   Sometimes I think I am too clever by half, though I do swear this has only happened lately with my new best friends [and which are gradually being weaned off me me lest I get too big-headed].  See, I don't think. 

Having upset someone for whom that is unthinkable I pondered some and realised that just because a doctrine doesn't suit me I have no right to diss another's devotion dedication and true belief.  Enough dreariness here already so I'll not go back into the past and drag all that muck out again; I'm a very big girl and never had nightmares, just didn't want any part of organised religion. 

But, BUT...BUT ! Were I to go that route I think old Zara might fit the bill...bit bonkers. I see my God like a large Nebulous  cloud...d'you know what I mean? Clouds of colour swirling across Universes and old Zar's beards and whiskers mixed up inside and a sign says FIND ZARA.  He know he didn't get it right first time round...not enough in the planning stages. But one thing my God would be...along with Bonkers, would be fair, none of this spinning round and pointing the finger and saying 'it's youhoo'.

Or perchance I might go the route of the many gods, the gods of minutia; of water, fire, earth and wind, chocolate cake and Tesco.

What I do know is that I am open ready and willing to suck on anything anyone sends me...I even still cannot believe this is happening or that you should give a monkeys behind.  

Just don't please tell me it is GOD'S WILL

I now have appointment to see the Oncologist.

FRIDAY NEXT

1pm

with a little bit of blooming luck...

and a lot of help I may now be able to talk to you without the page looking as if it has been edited by psychedelic spiders.  Whilst in the hospital and, under the influence of quite a few, new to me, drugs, well and strange experiences, I would find myself wide awake in the middle of the night and would write furiously on any piece of paper to hand, or a sheet or my thigh....all these bits to be delivered to Sazzie who, amazingly managed to make some sort of sense from them, edit and print them, for which dedication I am truly etc..

I must say though that my story about my nine chapters on Hedonism? was a lot funnier in the original Lesbianism version.  So this is where I start putting in the mad meanderings of my midnights thoughts.

So here you are my people, waiting with bated breath this morning, evening, night of the pre biopsy of the bleeding, bloody blight that bites and burns and burrows it’s many headed back-sides in my space. Today we are naming and shaming you, yes? er, no.

Bright-eyed and bushy tailed, scrubbed up and gleaming brightly, their futures glow from the dark Iris, the so white teeth and faux faux very expensively designed to look like Top Shop leggings and casuals....the acolytes tumble onto the ward.  It is perfectly evident to anyone with an eye for nuance to recognise the quietly unprepared-think fur coat and no knickers so that when small man...[who I know has very big place in my particular bit of ‘biz) all I know is lovely smile possibly Sr lanken...a lot of's ‘I have decided’s’ even as around and beside him his ineffectual (as it turned out) words are being recorded by his PA’s and er...people. ‘So very sorry, Mrs. er, Mrs...’ waving frantically brought forward...’Annie, but ‘der has bin some confusion...’

Me: No...and no and no. I was promised, it was written,  reserved BOOKED.

 

‘Let me explain.’

‘No.’ I am actually sulking, and glowering, I feel my face lowering and I want to charge him, like a bull. 'Allez you blithering idiot.'  With all due respect [oh how those words can wither] for all the many people around you [and I am sorry but I do not know who you are - or what part you are playing in this saga [I am beginning to enjoy this as my dear new steroid friends jog me up a gear in the old thought proccesses ] 3 acolytes begin to speak at once, and I understand that he is the Geriatrics Consultant [Geriatric...moi?] attached to my GP and he it is who alerted this man to my parlous state of wicked Shrek witch [see pics if you think you are hard  enough]and pointed out that the swellings involved were not caused by my new best friends the Steroids, but sumpen much more deadly  was about to separate brain and body or some such and above and beyond a nasty Geriatric cough.......elevating me onto a higher more interesting plane. Seems I have another Consultant, female, Greek, walks on Mount Olympus, and who, somewhere in this Universe is fed bits and pieces by these Handmaidens, and she will decide in the course of rapidly running out of time, whether or not I live or die.

So- no- not today but tomorrow.

 

The night has been very interesting - and it is all in texts flying in between Sazzie and  I perhaps she can sort them out.

Till we meet again.

 

Back at home: Wednesday 9 November

Bit of an update here folks.

 

I am in the hands of my darling and he had it all sussed out. Up most of the day, all the excitement of, well unlimited tv, sulky dog who no longer loves me best...crash course in Apple Mac and I would be ready to sleep at eight. So we’re all geared up...mac out of reach as are phones which tend to be busy with my  middle-night meanderings.  After half an hour of talking he says, okay, I’m going to read my newspaper, you obviously are not ready to sleep. Actually I am.  

I listen as he reads, shuffling the paper, rustling it’s leaves provocatively. Then I’m sure he is eating...surely that is chocolate paper. I accuse him...JP Ja’accuse...or words to that effect, certainly spelt  better. Then, suddenly, and I mean just like that, as if knocked on the head, he is asleep. 11pm, good time to go...bit of luck 4 hours...and he is sleep and I not.  I text Sazzie on the mean ness of it but the batteries are dead...and there is no  free plug in this room which appears to be ready for take off.  I listen with bared teeth, I  truly want to sleep but...my head itches...I usually have to sleep upright to stop the wheezes driving me bonkers but tonight Im going to lie down and wheeze for England, but, here's another bloody but...I’m imagining, at least I hope I’m imagining, that there are fleas in my mass of pilows.

 

Surely not, yet my head and neck and my wrists are going some.  Steroids? Let’s blame them.

He calls out, quite surly, as if he hasn’t had a good two and  half hours of shut eye...’Don’t move anymore, I’m coming in.’

 

I start to laugh and at first I hear irritation when he says not to get excited or I’ll have to have a Tina special [more of which another time, this aside has gone on long enough and you will have all left me by now].

 

‘What I really would love is one of your special nectars and...did I not spy scones in the kitchen? He agreed that the idea was good, fixed my pillows bought me mr. mac and that is why we both had a mid-night feast instead of a good nights sleep.

You are not going to like this but I’m moving backwards.  I shall tell you that you haven’t missed anything as, at the time of scratching this out in a midnight ramble, I had not been processed of the liver. I have now...but...oh dear those wretched buts.

 

No, what I’m doing is a bit of The Ronnie Corbutts [sp]  Well known is our Ronnie for never being able to tell a story in a straight line.

 

Some mighty strange things have been a happening to me and don’t any of you go jumping on the ‘God’ theme just yet ‘cos you should know, I’ve certainly never tried to hide it but from five to nine years of age in an extremely rigid Anglo-Catholic system is gonna kill or cure one.

Odd thing number one.

I think it is my second day on the ward. Two new patients arrive to fill our four bays. The woman in the bed opposite is very ill...her neighbour walking wounded as am I. I never learn the name of my neighbour and she leaves that afternoon.

Later, we talk, exchange names and I feel rather strange when I learn there is an Iris and a June...My mother’s name was Iris and, when she danced professionaly called herself June. ‘All we need now is an Eleanor’ I laughed...now that woud be really weird.’

 

‘I’m Aleanor..will that do?’ asked the darling girl who plays Soccer for Canterbury and cleans and pours us tea and sympathy popping her head up from her trolley.

Can anyone calculate the chances of that happening?  Iris eleanor/June all in my room in a time of crisis?

Thought not.

I’m ready for you.

 

Come on boots...start walkin’

Second odd thing, and you have been warned...not a godloving word, do you hear.

Last night, finally I slept, after a fashion you understand...guided and protected by one quarter of Tina’s magic pill [really got you going on this one, haven’t  I?]  I slept anyway.  I had said goodnight to my loved ones by way of the badly written texts, sent NOAO son home and had completely come to the conclusion that Palliative care was going to be it..the turned heads, the lowered look, the pat phrases...l just thought Oh well.

But I did sleep and awoke in a tangled dissaray. Time? perhaps five hours later...Tina’s pills are the biz...and for a girl such as l, a drug free space filled only with the lovely deadly nicotine, any pill will send me.

 

So I’m awake and so disorientated. I sit up, untangle the clothes and stagger to the floor. A nurse appears, a dim fugure taking care of a true patient. ‘Go back to bed...’ she says.

‘Yes, I will, ‘ I say...but l need to tell her. ‘I’m fine, truly Im ok.’ No that she appears  to mind whether I am ok or not...she’s is misty, odd.

 

But I am fine, I truly am.

I know.

I have no pain.

I am not confused or scared.

Whatever the outcome l KNOW all is well.

Weird or what?
Made the mistake of telling someone - it was as if someone's hand had been put  on my head.

Night night

 

[most of this was written in the semi-dark, in the middle of the night and disorientated awakenings - and I felt it justified to replicate without too much editing or cleaning up,  there are a few more coming up, after which we will be back in real time - Moannie]

A few hours later...

Tomorrow (Monday) I will have the biopsy which will decide my fate.


but first this side bar...

it is Sunday. I was admitted Tuesday and have been pricked and bled, rayed and scanned and in those few days I have gone from  nasty cough to nasty shadow to needing a stent to open the blood supply to some vital organs.

(Mum writes this as if it were a nothing- it was in fact critical- some perspective please Mum. btw I do have her permission to interject at will)

And I have been so sleep deprived that I had begun to believe I was invisible! Thanks in part to the steroid high.

With decision day looming NOAOSon decided that if I couldn't sleep and he couldn't either, he would come and sit with me until I slept. A lovely idea.

However we did rather misbehave.

Complaints were apparently made and we were stonily asked to please keep the noise down. I was sorry and docile but NOAOSon said that we only kept our noise to the level of the ward - why was there for example a bell continuously ringng, machines buzzing, a nebulizer which had not been turned off and a trauma inpatient  fretfully looking for his wife?

Staff Nurse left to consult the Sister and returned with the offer of a private sideroom, complete with en-suite and cable telly. Bizarre or what!

I moved in with suitable gratitude thinking of the silence - the absolute bliss of silence - I would sleep at last - for the first time in 5 days I might get more than 3 hours.

well NOAOSon left at 12.40am and it is now 2.35am. the silence is so complete that my wheeze is deafening and frightening - a spider is playing Cirque de Soleil acrobatics above my head and I thin there is a ghost in the corridor.

I hope tomorrows news will get me home.

                                 Milou is lost.
                                               and JP is getting too settled with half the village looking after him.

Moannie x
(Mum has asked me to tell you, that she is so grateful and overwhelmed by your support, love and words of kindness in the last week. I am feeding her your comments and emails. She probably will not be writing here herself for now, she prefers to give me her words to post on her behalf. But she has every word you send in her heart, filling her with strength and courage. Mum thanks you and  I and my siblings thank you. Saz)

Sunday....

There is a humour, quick, hot, RAW, cruel, hilarious in a cancer ward; at least there is in mine - or perhaps it is an unquenchable bubble of the ridiculous in me that sees humour in most things that are taboo to others.

Dignity goes by the west window - boundaries stretch like Popeye's biceps - no gentrified metaphors - no euphemisms but the cancer word is always accompanied by descriptive names, angry adjectives and the vilest epithets.

We survive

A woman screams next door and in the ward behind me a man calls loudly,
'Murder! Murder!,

'Call the Police' she screams, he calls the Police.

June and I - cohorts, funny bones in sync; exchange side glances and begin to giggle - just a slight shaking of shoulders, bobbing movement of the hips. I tell June my theory of sound and mind pictures; a theory expanded by twice daily ingestion of the miracle of steroids, which seem to boost whatever bare minimum of talent you never have shown an interest in.

For example; one night shortly after my first dose. I wrote - in my head and in the middle of the night while all around slept- nine chapters of a thesis on the joys, perils, rights and wrongs of hedonism - a subject on which, I swear to God, I know nothing more than seen in 'the velvet something or other'

One night I solved an equation, 'DUH!!' and another I began a sitcom situated in a  cancer ward and so it was not a great stretch to explain how one can or cannot live with weird sounds:

'It goes a bit like this....'

I began, already feeling the thrill of the laugh we were about to have,

'Mrs Tourettes of the mouth goes -
'la baba, la baba, la baba'

and I mean ad infinitum - and we are going mad, needing sleep more than a druggy needs his fix

' It is possible to survive this June', I say,
'What you do is this: you close your eyes and listen for the rhythm; doobly, doobly, dooble dum, repeated at a constant pace in that low voice she is using. Now it is possible to envisage a small herd of Pyrenean mountain goats running across a wooden bridge...'

June's head tips to the side and gives it some thought.

'Yep i can visualise that; small, furry, horny, rough wood. Got it!  (Double entendre) ... doobly, doobly, dooble dum, "   "    "   "  A HA!!!!'

but then, just as you are about to drop off, lulled by this visual and aural comfort, she suddenly changes tack,
and doobly, doobly, dooble dum, suddenly goes dolacky, dolacky, dolacky ad infinitum.

Bringing us back from the arms of Morpheus just in time to hear Nora scream again and the man yells
' Bloody Murder call the police!'

It is about now that June and I erupt. Squirming with tightly crossed legs and streaming eyes and to finish off the whole debacle off to perfection: Nellie- a rather prim and quaint lady who has been listening with increasing wonderment, sneezes loudly and fires off the loudest 3 gun fart I have ever heard.

Collapse of 3 stout ladies.

( more of this sunday post to come shortly.. don't go away)

Moannie

(posts are chronological, but may be a few days later as I receive them, handwritten then decipher. And yes as I have been asked, if you wish email me  I will try and update you as I am able, Saz)

And so...

The x-ray led the way to a scan that showed it clearly. A nasty stranger had invaded me! Invited.

Next step - identify.We thought in our grasping ignorance.

Our particular god is Greek. She is guarded and protected by her acolytes, who poke, prod and probe her young clean and clear of bug or germ or age or fear! They smile, nod and pass through words back to the messenger, who take down every word on her Apple-mac.

                                        They tell me nothing.

                                                     But Toni does.

I've swollen face, neck and throat - I look like my mother times 3. A Shrek monster, pale green and grey hair, thin and lifeless, My arms and hands stiff with oedema, bear testimony to fruitless searches for veins. I blame the massive dose of steroids - my friend now because it soothes the beast that clings with dirty nails to my tender bronchi and lung tissue. Even as it gives me huge appetite (I see beauty all around me) and keeps me awake all night. But it was the beast blocking the major artery, Toni tells me; so the biopsy must wait - a blow. For the beast is quick to grow, aggressive and greedy.

So I have a stent inserted by a team of demi gods drilled to perfection.

I trained in '55 which is to 2011 as the invention of the wheel is to mapping of the human genome.

I watch as a catheter is inserted into the artery in my thigh and passing, painlessly up to a major cloud of white that's blocking and compressing the dark artery- deep in my chest. 

The surgeon patiently, kindly answers my questions and seems to be as enthralled as I at the magic he performs when the stent opens and blood gushes through - he takes my hand and asks,

'Can you feel any difference?'

and I think that I must say something encouraging - a small white lie would surely be allowed! I touch my face and start to say,

'It feels less taut, stretched...!'

and then I say, in wonder, 'It is!' -  the tenderness has gone, the skin is softer, I swear.

By the time NOAOSon and Lita Mona appear, they are shocked and delighted that I am a deal less scary and Sara, who arrives later - a wonderful surprise - appears to have been drawn down here on false pretences.

And as I am drawn back into the world by my push me/ pull me duo of porters, I ride high on my bed delighted to fighting back.

      The first fecking blow.

                           Take that!

Goodnight my loves.

Moannie x

My thoughts...

I had thought it best to just say 'bye' - let you go.

Let you down easily - but the more I considered, the more I felt that those of you who cared - really cared in this odd universe, where total strangers become loved ones - deserved to be treated as such.

And so I shall be chronicling this new - last journey with you - the truth as it happens, with clarity and humour

- for even the gallows' humour is a necessity.

Moannie

(whilst Mum is in hospital I shall be posting her words here and recounting your words to her in turn. Saz)