Wednesday 28 March 2012

Looked around a Teenage Cancer Trust Ward

So peeps,

This is not my usual after a check up post, no, you are lucky to be getting an extra one.

Well it's nearly 11pm, I know, I know, way past my bedtime and really want to get this post done so I can go to bed, but something keeps on leading me away to piss about online rather than write this.  If I were to do what my tutors at Uni would suggest, which is to reflect on why I am avoiding it, I would probably say it's because I'm avoiding it.  Nothing like stating the obvious!

So, looking around the TCT ward at UCH was amazing.  It was great to hear from the staff on the ward that they look after all their cancer kids in the way that I should have been looked after by my consultant in Edinburgh.  It also brought everything back to me as I was shown a room that was similar to the room I had in Edinburgh.  The difference being the amazing view of London from the window and the bathroom- it was massive!  Also the nice wall paper on the ward, the kitchen, and chill out area with a TV, play station, pool table etc.  Part of me is so glad that I had my own room and was so isolated.  The other part is really angry that I didn't have access to a TCT ward and the correct care from the consultant.

The reality of it all was also brought to my attention with June (she wasn't a nurse, can't remember her role, anyways) explaining the different types of cancer that tend to appear in TYA (teenage and young adults) and when she came to Leukaemia she said that basically they get admitted and are there for at least 6 months without leaving (or don't....)  It made me really realise how lucky I have been, and that whilst I say that part of me wishes that I'd had a bone marrow transplant, the idea of being on a ward for that time is not what I want, or wanted.  There was also a guy there (I think 20, can't remember diagnosis) and he looked so miserable and when I smiled at him, he didn't smile back and I thought, fuck that. Fuck being tied to a hospital bed for 6+ months because I feel too ill to move.  Fuck having no hair and being bloated from the steroids.  Fuck not being able to go and sit in the sunshine (admittedly not for long as even when wearing factor 30 I still burn).  Fuck not being able to pop home when I feel like it and being with my family, friends and my cats.  I've never really realised how lucky I've been until Monday morning. And I feel like a bit of a twat for wishing that I had had different treatment.  Yes my life is not always what I want it to be, and yes, I completely exhausted myself because I did a 'normal' amount of things at the weekend, so have had to take it easy this week, but my life is still mine, and I am in no danger of losing it (yet).  I have been so lucky and have taken it for granted.

On a slightly happier note, here is a pic of my name from the credits of the film 50/50.

As always, with so much love, and a slightly wobbly smile,
XXX

Tuesday 20 March 2012

A Poem and a picture for you

Well my lovely bloglets,

I had my monthly Healing Journey meet tonight, and was given a copy of a poem that I thought was rather fab, so thought I'd share it.  Here it is:  Oh, and at the bottom is a lovely Hokusai picture.
Hokusai Says by Roger Keyes,


Hokusai says Look carefully.
He says pay attention, notice.
He says keep looking, stay curious.
He says there is no end to seeing.
He says Look Forward to getting old.
He says keep changing,
you just get more who you really are.
He says get stuck, accept it, repeat yourself
as long as it’s interesting.
He says keep doing what you love.
He says keep praying.
He says every one of us is a child,
every one of us is ancient,
every one of us has a body.
He says every one of us is frightened.
He says every one of us has to find a way to live with fear.
He says everything is alive -
shells, buildings, people, fish, mountains, trees.
Wood is alive.
Water is alive.
Everything has its own life.
Everything lives inside us.
He says live with the world inside you.
He says it doesn’t matter if you draw, or write books.
It doesn’t matter if you saw wood, or catch fish.
It doesn’t matter if you sit at home
and stare at the ants on your verandah or the shadows of the trees
and grasses in your garden.
It matters that you care.
It matters that you feel.
It matters that you notice.
It matters that life lives through you.
Contentment is life living through you.
Joy is life living through you.
Satisfaction and strength
are life living through you.
Peace is life living through you.
He says don’t be afraid.
Don’t be afraid.
Look, feel, let life take you by the hand.
Let life live through you.
 

Sunday 4 March 2012

More exciting news....things are going MY way!

Well my lovely bloglets, I had my check up just over a week ago and not only did I play the role of good samaritan and convince a young gentleman to stay and not leave I had some very good results.  I suppose I shoud explain about the young gentleman. My consultant came out to the waiting room, I eagerly held my breath hoping that she was going to call me.....but no.  When sighing out my disspointment this young man sitting next to me said I should have seen the other consultant.  Oh yes, shoud probably mention that another consultant had called me earlier but I asked to see my one instead.  So I started chatting to this guy, found out he is 25, waiting to find out what he's been diagnosed with and HASN'T TOLD ANYONE!!!!!  He told me he's been in another hospital for a month and just told his famiy he had a stomach problem......  I can't get my mind round this, but then again, it's not my position to, or to judge it.  Everyone deals with it in their own way.  I told him a bit about my story and that I'm on a pill form of chemo and haven't lost my hair etc.  I also told him about my approach - telling everyone, and how great The Hammersmith is, espeically my consultant, who it turns out, is his too.  He kept on telling me how he was going to leave because he had been waiting for hours.  I explained that this is how the clinic runs because they have to wait for the blood to be processed etc.  I also said that if he left, he would just have to come again and wait all over again.  I was then called and I mentioned this to my consultand which was good as she was seeing him next and meant she had a bit of a heads up about where his head is with it all. So that was my good deed of the day.  And I'll tell you something, the wait was worth it because.......drum roll please.........  my platelets are....... NORMAL FOR THE FIRST TIME IN 5 YEARS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  AND the Leukaemic rate had dropped from 0.015% to 0.014%, so am really looking forward to my next check up to find out if the rate has dropped more and to see what my platelets are doing.  And you know what, the fuckers had better still be up! What else?  This last week I have been at home for reading week which has been really lovely.  Have had so much work to do, so not a proper break, but at least I haven't had to cook or get up early for uni.  I've also been good and been running.  I did 16 miles in 2hrs 40 and a doing 17 miles tomorrow.  The marathon is 8 weeks today, EEK!  I will (fingers crossed) be fine.  I just need to work out how to not get a stitch.  I know it's to do with a muscle not getting oxygen, so am going to sign up to a pilates place in Clapham which is really good, did a taster session and couldn't move the next day - I hurt so much!  So doing that shoud help my core muscles and the curve in my spine- it was flat at the end of the lesson which is amazing.  I hope this and running with a (very sexy) camelbak (or is it camelpac?) anyways, its a small, lightweight backpack with a water bladder in, so I can run with water without having to hold it in my hand, will help prevent them.  There is no way in hell I am dropping out of it just because of a stitch.  I also don't really want to run nearly the entire length of it with one as it hurts and slows you down.  Anyways, enough of that. I have been asked to speak at next year's Find Your Sense Of Tumour (TCT conference) which is VERY exciting.  It will also be 5 years after I came into contact with the charity at the event that it happened at.  I've also been asked to join a peer review board for teens and young adults when hospitas have their reviews, which is masively exciting as it means what I say/ask will have a direct impact on how the hospital treats its TYAs. What else?  Probably a lot.  There was excitment at the prison a coupe of weekends ago, there was a helicopter circling for at least an hour with a spolight sweeping part of it, but I never found out why.  Also the prison was very quiet so I don't think anyone had escaped.  Maybe it was somene who had gont onto the roof from outside?  Or just a practice?  I don't know.  If you do, please let me know!! Uni is going well, have passed everything so far.  Some by the skin of my teeth!  Need to work hard before my physiology exam in the summer, but it's my only exam, so that helps and means I can just focus on that.  I have a short answer test on Monday for my massage course and then the practical exam before easter, which is my only other examined course in as much as I have a specific test to do.  My clinic module is examined by a portfiolio I have to do and by attending the minimum amount of hours needed.  The other 2 modules are just essay based.  It's quite nice not having loads of exams to worry about, and hopefully the one exam won't be at the beginning of the exam period, so I can have a bit of an easter holiday.  Then I suppose I need to get a summer job.  I'm going to see if I can just earn through  massage with people coming to me/working in a clinic etc Having said that I haven't had to cook this week, my parents are not here, they went to stay at my Godfathers last night so I have to go and put the chicken in the oven so I have something to eat for lunch. So lovely ones, oh hang on, here is my link, PLEASE PLEASE PLEASE SPONSOR ME!!!!!  And if you have already, THANK YOU!!!! www.virginmoneygiving.com/katherineruane Lots of love, laughter and smiles, XXX