15th November 2012
I was in the chapel this morning mediating
(that’s just how I roll these days). I was contently breathing lovely white
light up and down the chakras with particular attention to the hear chakra. The
heart chakra is where the lymphoma resides so
I pour some extra light in there for good measure. It was going well,
and then I realized that Robbie Williams had arrived in my head; he was singing
‘come undone’……..”I’m not scared of dying I just don’t want to, If I stopped
lying I’d just disappoint you….”
The first part of that line has always
resonated with me right through this journey- it sums up a long standing
attitude about death. We all have to die, I accept that as inevitable but it
doesn’t mean that I want to and particularly not in my thirties, or forties, or
even fifties for that matter. However I will tray not to be greedy, the fact I
will very probably see my fortieth is bloody ace, what a gift!!
Now recently the second part of the line
has been on my mind…..’if I stopped lying I’d just disappoint you” That is how
I have been feeling, like I am have made myself put on a front although I was
disappointing people if they knew I wasn’t doing so good emotionally,
especially as I spent so long untouched by sadness. But looking back on my blog
I think it’s pretty clear that my mojo was becoming more and more elusive.
This led me on to considering the concept
of ‘braveness’, I have long poo’ed this idea when directed at me, I have often
dismissed it with words such as; “I am not brave, I just have to get on with it
– I have no choice”. The night before I came into hospital I googled the word
brave and I can now inform you that yes I am brave actually. Simply put bravery
means confronting pain, adversity etc without showing fear. Which brings me
back to Robbie “I am not scared of dying, I just don’t want to” Despite my lack of mojo, fear isn’t the
cause, disappointed in myself yes, mourning my previous life yes, but not fear.
Yesterday’s chemo was horrible, today I
have a different on. I don’t know what it’s going to be like but am I afraid,
no, why well cos I am brave! No, there’s no point in wasting this moment now
when I feel basically fine imagining how yuk I might feel shortly. Will keep
you posted.
Couldn’t get to sleep last night (steroids
I think) so I spent some time thinking about some useful ‘patient tools’ the
first is called the ‘Gruffometer’ the second is the ‘MSFB’ tool.
Initially I was going to call the
‘Gruffometer’ the ‘Shitometer’ but you know, maybe not entirely appropriate
(plus it also might be confused with the ‘Bristol Stool Chart’ which I will
talk about another time). I first heard the word ‘Gruff’ used by my little
brother and his girlfriend when they were trying to convey to one another how
crap their hangovers felt ; “on a scale of one to Gruff – how bad is it??” I
loved it and now will use Gruff as my measure, thus the Gruffometer is born. I
will post a photo of it once I have made it , oh yeah this is a full on
project! My mate suggested use of a laser pen so I can point to my gruffness
state, someone else will move the arrow, I don’t even have to move
unnecessarily and everyone will have a clear visual summary of my needs.
The second project is the ‘MSFB’ tool,
stands for make Sim feel better. This consists of a circle divided into 8 pie segments, again
with an arrow in the middle. This would have been extremely useful yesterday
when I found it hard to communicate what I needed doing or not doing when I
feel massively gruff.
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