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.  not.work. 

The phone would ring and I would get up to answer.....it 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 ...you'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 .............

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 back...to 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 ...............ps ....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 .....it wasn't me !

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 , ...now 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 .

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

Aye ILEOSTOMY !

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 .........