Saturday, April 28, 2012

Dancing ......

I cried today ...watching dance

of all the times of grief and  and sadness with my floating

this brought me to my knees  ,

The emotion that welled up inside was a watershed of all the hopes and dreams i had for my life .

I loved to dance .

to have that freeom of movement and lightness , its uplifting and pure .

im going to dance again  one day .........

Thursday, March 1, 2012


The tape ran out

in my head

again .......

The merry-go-round  started playing it's tune ...that eerie msystical  melody 


Oh head what have you done


Word's gone   but so clear on my head, with the damn music and the wonky leg ......

it's like lead


Home , home I want to go home ....

to my self

again .

Sunday, February 19, 2012

It's been so long ,......and life well life has been ...

so very okay  ,isn't it weird for  me to say that !  well maybe not because this is after ,after the terrible events ,the events that made me mad  ,and not angry mad ... just mad , insanity if you like

either perceived or otherwise I felt like a mad woman , like a bag lady you see on the street with the toothless grin or the mad womens smile ,who you cross over to the other side of the street to get away from .....

there's some irony for you too ,as I never did, I never avoided them  ,ever! but I felt like someone so isolated from the so called norm ,a mad woman who lost her place our so called ,real ,normal world.

oh to feel so normal now ...and I know I 'm jumping the gun  ,  is so ,so spectacular and that sounds so dramatic but its true ,  or , it is my expereince and it's wonderful ,  I feel ,well thats just it , I feel like me ... or nearly ,, I  take a look around me and I  just breathe , a breath like nothing else , I  stood in the sea with waves splashing  over my feet and I  laughed and put my hands up in the air and said YES!!  . and more treatment may be ahead of me ,  but I'm  breathing now and life is good .........


Monday, February 6, 2012


You  .you   ,  You  .well you  .......

I can't stand it 

sometimes it rises up just like a storm  ,a storm that comes with a powerful rage

A rage   that grips the sides of my soul ,

while I'm writhing and twisting  ,trying to  let go .

I try to come back from it's terrible grip' the floating  is now driving to let itself known  .

I'm coming to surface 

with eyes of fear   , my arms are  waving and trying to break through 

the feeling s of hatefulness rise as as I wake  ,because now I know what's coming in the light of the


My headaches have started ,the sickness is here.   .

Sunday, February 5, 2012

Changes and Strangeness............

When you know  you have lost a few hours in the day    ,   after   you've got up from the chair , and looked up at the time

It   starts to really play on your mind .

I'd watch other people ,looking purposeful and busy ,and think  , they were so, so lucky ....

then I'd change heads and for the rest of the time  ........I was the other people .

Except for the left and right confusion, and the head rolling night .


Elastic being pulled ,one head up  ,one head down  ,imagine the pull chewing gum  .

your hand comes up to push one side down  .  left or right  ,  to swirling  and spinning  around

and around .

I want to just stop it ,the pushing and pulling . 

so I float free ......on a carpet ,softly ,up and down,   up and down ....holding my feet for anchor ............


back to earth .

Friday, February 3, 2012

Drivng Miss Crazy .........

I forgot how to drive .  This as I remember it,    was the sit up and take note  .

If  I'd   just remembered to write the dam  note ...... it would have been quicker  to start the process of lump sitting there ,growing and growing  and it not letting me know     ,why oh why didn't it keep letting me know?   instead of waiting until I  got in the car ,  driving along and stopping would think I' d go home once I remembered  again to use the  dam pedal  which just before was just something lying around taunt me ......

You'd think that the safety of my son and others would make  me go home and ring  someone '........

but I'd walk in the door and put dinner on thought ,or reminder or memory or sign ,I just put the dam dinner on  . about ,'  lights out there ain't nobody home ..'

.It was my son , my little man who has  seen such a lot . with his mother going somewhere  ,some days too far ,that he'd  look at me in puzzlement  and ask .'.you okay mum? ...'......

It was our date night ,a night at the  moveis to see CARS he was bubbling with excitement , as I was too ,

We drove into the car park and drove to the top , and then the car
stopped , I looked at him  and

he looked at    me ,he said   ' member mum ,put it in park we will wait  for you  do the pedal ,  see we are stopped ,'  ..I looked at him in wonder, I so  remember that   ,  and did as he said foot was ready and I started again ..we drove to the  park and we breathed ... . it was only a few seconds as it always seemed, but with my boy saying what he said to me ,  I  knew ,I  just knew ,I would keep this memory

We had a  great night with nothing more ,chatted about the movie and got to the door ,I walked on inside and got out my book to write me the note remember . 

one more drive to the doctor with no  more stops after  i had 2 days of school ,shopping and errands with mum ,   knowing  it would all soon come clear . I was told to stop driving directly after a neurological test   and drove to mums ,told her what happend and she drove me on home .

This was the start of the of the lump being found and soon no more floating , I would come to the ground .

*Dedicated to Tiare * I love you.


Thursday, February 2, 2012

Away , away ,...... from me .......

 I'd put something down and forget where  I had left it'''''''
away from 'me'

I  start to talk to somone and with a jolt I'd  realise the thought   I had , had totally gone....... away from me

I'd trip down the stairs to go outside and madly grab the rail as I felt myself fall ,like a little old lady worried about her brittle bones ...terrified ..........away from me

I'd put a pot of rice on the stove  stove and walk off and leave it until the smoke alarm beeped 
-stopped   cooking rice pretty quick '

away from me ........

Stopped     cooking and   cleaning and preening and ..well being me '

That me on the couch at 5 pm sleeping so deeply was......... going away from me

to  the night times of floating of trying to surface  from the suffocating fog that surrounded her, twisting and turning and whirling her body so she would not come back to the confusion and sadness of the first light of dawn ,that instance  of awareness  ,  I always  yearned  for a sign that it would just be  a normal day ,but

I kept going......... away from'me'

Wednesday, February 1, 2012

My Saving Grace .......

I had  a saviour over this time  ,if it wasn't for this Angel and yes I 'll call her an angel as she does shimmer  with brightness and looks gorgeous in white

My Chris ,my friend has rung me every morning for as long as I have had my cancer .

The mornings after the night' s with the head that rolled ,with the weird walk roll,when I was floating then drowning ,and spinning ,with shadows of black and grey. The mornings when the thing at the end would. 

The phone would ring and I would get up to was like magic sometimes......

'Good morning Gorgeous ',she would say ...and my day was brighter insatantly .

She never knew how bad it was ,but remember I didn''t either.

This brain of mine could wipe things out as quick as a wave swallowing the sand .

So my saviour girl

Thankyou xx

Something may be not quite right ?

I started to have this strange routine when I  was preparing for bed   ,I  had 6 pillows , my nice white pillows,   these had to be placed in a certain way ......perfectly  ,  this was winter time too so I  had an extra little blanket ,a bright colurful one too ,I   could still handle colour I guess back then ,but the sheets and pillow cases had to be white  ,  but I  was always cold ,because I  couldn't handle anymore than that one blanket ,I' d lie there really really cold sometimes just staring into space thinking to my self I'm cold and I  woudnt do anything about it .

I talk about pillows a lot, and this is why, as somehow I
 knew if I  wasnt comfortable on them I  thought I  would drown in them'd think I  wouldnt want them so soft?  crazy . The silly thing is,  is that I  hardly moved in bed anymore because I'd  also stopped sleeping on my side ,this made me feel ill ,really,  really ill ,waves and waves of nausea ,I  found some anti  nausea meds and stated popping them like lollies  .

Anything to keep that sickness away ,esp before bed and then again after the night ,what came to be called my' morning sickness '. I'd wake up sometimes so stiff and so sore ,  I'd  lie there for a while trying to move ,and it was like my body was stuck   ,I'd    send a thought out to my right side ,and my left would do it instead  ,  In my head ,I  thought I looked all twisted up ,the arm over my head and my leg all skewed around .  In reality I  looked quite normal ,I  know this,  as a lot of the time Tiare had come in the room and there was no look of surprise on his face at his mother all twisted into an odd shape even though every time  I was waiting for him to say something because I was convinced I looked weird.

Yes something wasn't quite right .............

Tuesday, January 31, 2012

White ......all consuming white ...........

I found white  ,not just the name ,or the beauty,    but    the absolutness     of    it.  I look at white, y head expands  ,taking it in  .I am calm and there's little lights sparkling -like you see at night    looking at the line of the horizon of night lights flickering over a calm dark sea.

I inhale white......white furniture ,white cotton sheets with soft pillow cases  ,my antique white ones  ,the ones that give me comfort for a night of floating . the ones that cover my soft ,soft pillows that I grab on to to centre my head ,the head that  rolls with the weird walk roll .

White sand ,   I coud look at it forever - shining ,shining white ,white , sand with the specks   of gold shimmering all the way to beyond .

Angels ,those ,cute littleangels    you buy    for a      treat I give mine to special little people ,so they can  have my white too ,to guide them xx

So many good and beautiful  things discovered .

My Floating isn't all bad ,

if I can have this .................

To Wake Up Singing ........

I guess sometimes my mornings weren't/aren't  all bad .......I  wake up singing  sometimes   ,more now as I'm not floating anymore (more about that sometime) .It is  my speaking in tongues thing I  guess,  but as I like singing and some say I   have quite  nice voice ,it doesnt really phase me ...I  know it seems strange but I  have learnt to embrace some of the  new me ,  otherwise where do I go ? me  I mean  ,getting lost in another side of personality is a confusing and scary place ,so I  guess to pick the good bits out is a healing thing to do .

I open my eyes, and out comes     ;hyla myla ,tyla seela ,effy nae nae  , ista tynae ,effaa nyla , ....see my own language ! and its sung in a tune of ..well I  know the tune and you all will to but don't know how   to write up the score ,  kinda like this  la laa la la , lala lala ,la la la laa ,la lala la laa laa lala over and over again for about 2mins? ,sorry it looks and sounds weird but I  think the weirdness is ,that it's the words ,I  mean who hasn't woken up singing  in their lives huh?   hey I'm  embarraseed looking at what I' ve written ,but its singing and no one hears me , /tiare wouldnt have a clue ,and I  never sing,I  whisper if I think someone may hear me .  Well now you all know~ but just think of me being okay with it and I  will be okay with you all thinking OMG . 

See the headaches are still there when I wake ,so a bit of calming singing is good for me  untill the meds kick in , the brain is a powerful ,thing ,and my brain ,my new ,or fixed brain shows me ways of coping ,  I loathe the bad heads ,but they are kept at bay all helped by little srtategies to let me live with the changes     .I love my brain now post op   ,  Lump you really were a pain in the ass!   .........

Causing Trouble .............

The Dairy Incident ...........I went to the dairy over the road ,like I  do at least once a day ,  (lollies !! )

Now remember  ,I  was getting things twisted as heck  ,anyway I  chose my lollies and went to pay ,  the dairy owner was on the phone an
d I  was waiting , ,now this is where the madness starts  , all of a sudden    I   thought I dont have the   right card ,and I  want some coffee,   and I  think I  need milk, and oh god   which bloody card have I  got .?  I   walked to get coffee ,I   had a browse at something  else  had a wee chat to someone walking past  ,dwadling really ..then went back to the counter ..he  started to   do the transaction   and I  whipped around ,put the lollies back and decided I   think,  to    go back and get more money ....I had coffee in my hand ? paid for and no lollies ...I   walked out of the shop and I heard him call me ask did  I  pay for the lollies ....I  yelled      at him 'If    you weren't on the   bloody phone you would have been concentrating     and seen       I  put the lollies back,      you idiot and if you think I'm  coming back  to  your shop you have another think coming   he yelled'  good!    dont come back .' ..and I  came home and told   my flatemate  and tiare ,    they agreed with me I  was right to do what I    did ,,,,I  even  put it up on fb as a funny scene and saying I  was more than within my right s as he treated me so badly etc  and you all agreed too  !  .what you    dont know and what has come back to me ...he was actully waiting for me to make up my mind .....and I  guess he asked about the lollies as well,, I    guess he had every right to and he was probably soo over waiting for me .  Time goes in weird blocks for me even     now but it was worse then . I should      have wondered when tiare said to me what took you so long? I   said 'what ?I'd  only been there a few minutes ,it was more like almost half an hour ....dairy people and I get on great again ...I  explained about the lump   they said they wondered if something was wrong ,he also apologised and yep  he WAS  wondering how much longer I   was going to be!

So there's a  big confession  ..........and sorry to all those who agreed with me ....lets blame the lump wasn't me !

Monday, January 30, 2012

The thing at the end ........

This above all was my first "What the ? "   I think ....I   need to explain,   a lot of what I'm writing now is memories from now ,if that makes sense . I'm writing as something pops into my head  ,if i didn't write it there and then the thought s would be gone .  Nothing will really be in sequence   ,or then again it might !  are you beginning to see how this ole brain of mine works!    or     not   ! as the case may be .

See there I go ,going on.....nearly lost the thought   about the thing at the end   .

O f course its  my foot ,my little white foot! ..........................

I'm going up and down putting my hand up ,pulling pulling on air ,all my right side now has gone all airy  fairy waving and splitting ,  my god I  wanna wake up ,its pulling   too much ,wave, whisper ,wave ,whisper  ,rollling , whisper, whisper  ,whispe,r      WHISPER  ,I'm grabbing  my face twisting it down ,  ,it wont turn ,please please turn , it' s heavy dragging me  down ,heavy so heavy ,I m opening my mouth trying to get air ...can't breathe ,come on ,please  let me go I   want to wake up ......

Could not move when    I  did for what seemed like ages...The Morning    thing ... I went to put my foot on the floor and I  felt nothing ,no feeling in it what so ever  ,I  tapped it ,I shook it ,I  asked what it was!!! ,it was really cold too ,but I  couldnt stand ,like trying one high shoe on ,and trying to walk   ,I think it only took a couple of minuites for it to get the feeling back ,and I think I had no more problems all that day ,but this happened most mornings after .untill the worst times when it became more random and not just after a night of floating .

Sunday, January 29, 2012

The bowel bag blues ............

yep I was a bit weird anyway ,or this body of mine is . Looks horrible written doesn't it ? but  it's real  ,my life , my pain in the ass ......or stomach as the case may be


I started ignoring it of course .   Its on my right side with the arm of cellotape  ,the leg of plastic ,and the thing at the end

time to empty  ,   oh christ I don't know where the heck the s..t is suppossed to go

Tiare is waiting ,calling 'Mum hurry up'!

C an't show my  tears.

there it's done

it makes me sick .

Absolute puzzlement ,this thing hardly phased me ,I  coped so well  ,I just did what I did ,the only worry was having enough bags ,my standby ,change every 2 days ones.

but  I'd be twisted in my clothes ,the right didn't want me to fit my things.

A flash of night  floating comes to mind

the weird walk rolling and splitting of my head

I shake that off  ,I don't want to know  ..

School  Run  Time .........

I Can Hear Her, Him, Them ,They .........but...

Right ,they are talking  about how to do something,

mmm mmm mmm mmm

What shall we have for dinner?

mmm mmm mmm mmm

Oh yes I agree

mmm mmm mmm mmm

Nod your head Kim  ,Nod your bloody head ! ...there you go !  they are smiling --- Whew!

Don't pick up the cloth to clean !..look, you are a good listener . got a prize for it as school once .

mmm mmm mmm mmm

They look clown -like.     Mouths opening and closing .   Not being rude but they close open close.

Imagine if there were four of them in a those fairgrounds .

I hate fairgrounds ,but images are always in my head?


Where the music plays that creepy melody like they show on the movies .

You see an empty lot  with one lone merry-go-round in it's garish colours and one horse is going up and down in a moonlit beam .

Fairgrounds  Hmmm

Oh shoot they're getting up ! what have I said?!   

Whew they are smiling !

I did good .............

Day Time .......When the Coffee Cup Moves .......

There they are.......the little soldiers

March  march march march 

My wee ant army watching me standing there ,watching them, watching my coffee , watching
 the sugar bowl .....watching me !

Little white dots All Over the bench top

I start making rivers in the white crystal sand with  the USELESS  teaspoon lying there like a big steel fly-over  giving them a helping hand .

yep go on ,march   ,march ,  march    march

I know you tip it all over the place just to annoy me .

Coffee's  Cold   Again  ..

A float with the Mostest

Coming thick and fast now ,memories of my floating ,it's like greeting an old friend ..a horrible pain in the  butt old friend but familiar in a; being stuck in a fog again, and finding my way back type way .

We were flying ,but my hand  ,the right hand kept slipping from his  ,I was rollling, walking ,you know like the hunch back of Notre Dam(sp)  he was running  running ,  kept looking back ,and staring at something over my  left shoulder ...the sense of urgency to follow him was so strong,  but my  head started the roll ,  I  had to pull it together ,  I'd split again ....he hadnt noticed ...........I cry .......theres a corner coming up ,   I   cant turn right ,  I  yell in my head 'I' ll fall! '   he' s like a panther now ,his outline is a blur ...hes got my hand but not me  ...... I 'm swirling so much ,  like a fairground  Spinning top  , but no colours, just whirs   of black, white,  and grey .....thank goodness . ,colours hurt ...he's all white like marble   ,hair   black ,  hair   flying back ....he's beautiful     ...and gone ......always  goes and I  float to the top    to the left ,  to the left grab my dream of my Mill .

A Morning , some mornings , all mornings? ? lots of mornings .........

My pillows weren't right , I could feel it as soon as the alarm did its beeping thing , my head,weird angle how that used to happen,    I don't know  , always made me think of that song 'To the left ,to the left ' god knows what it said after those words but yeah to the left  to the left ......  reaching around to my pillows ...god what a miission .....I  only had to use my arm ,but it was always stuck ..I dont know somewhere just stuck ....wave the arm  ,which one ? I think the left   ....yeah the left  because the                                                                                                                                                                                                                                                                                                    
old right  was sitting there looking at me a dead fat roll of cellotape actually ...some circles were there  I  think  ...hey arm!  yo ! I m a moving you now ...
Tiare has to go to school ya nut ! ...talking to arms ? but thats what we   did  me and arms ,,,,seemed normal .
OOh good pill time,  god Kim you really have to sort out your pills !! you are talking to your arms..the stuck cellotape arms that look like cellotape with circles and  and they lie there  like ,well like they do .... okay arms we are off .

A ah shoot my back and the right thing on my side ..leg thats it ..buggar now it looks lke a long toilet roll ,glad wrap type thingy ..pills K im.....stand up , sit down ,cant feel the end of the bloody thing AND the head still on the left ,   think yay  though Leg!  god where Ha ve you been and How u doin ?  pretty good now . thing at end ..yep moving  .lol!  I think

friends must have been good last night ...Yo
Joey ya helped me out there    cheers ....   and no don;t say  ,J ust don't  ..please dont .....S hit cant help it  ....sklya macca moo  ..oh f's  sake where does that come from ?     sklyla friffen macca moo ..insta looky,  it s not Me  its my mouth .. efsta naca noo ......... Choice....... speaking tongues .. .......walk out of the room  NOW  ...that  stops it remember .......  deep breath .....TIARE TIME TO GET UP !!!!!! breaky in five ........... Arggh  must have been a bad night  ....all forgotten .........Hey bub I love you ,just going to have my  pills ..  . .... bang into door on the way to kitchen ...bugga must need new close up lenses for my specs .....put jug on .............

Saturday, January 28, 2012

Floating .......Away from Me ........

I decided today that I am ready to write about my brain tumour ,who  I will call the lump  untill I  have explained more about it .

I floated you know, every night for weeks and weeks ' First remembered time' ...........Imagine lying in bed and closing your eyes and you start, like whispers ,a wee  roll then another  and another ,untill all  the whispery rolls are merging to become like waves and then you are floating ...... I put my hand  up to stop it , but now my head has almost split to the left so one eye  is up and one is down an  alien being  ,  my hand is waving over my head now ,I' m  dancing ,quite beautifully too ,,  now I' ,m rolling to my side and my left side lines up ! yay symetry again ........ but the left is feeling like a tidal wave now and I  struggle to lie flat ....flat  means no floating  for  AGES ..  I can breathe slowly and wait
 for the next  whisper ,but eyes wide open ......Its 11 05  pm ,I  last looked at the clock  at 11 PM .... ..It can't be  .....I was  that all night surely? the floating was a nice dream!!!   I was dancing .