Posted March 13, 2018, in

 

It’s all about faces, isn’t it?  

In our everyday life we present to the world a face you perceive as how that person, those people would like, want you to be; or so we are led to believe, or wish to.  
It’s an impasse because in all honesty we move around and react just the same as actors on a podium/stage, giving the audience what we think they want, making it easier for them to approach and connect with us.  
To whom is the injustice being done?  Is it ourselves to maintain a sense of normality, or is it whoever we are connecting with to make it easier for them?  
I’m frustrated because in a sense I am not doing myself any favours, and although I don’t want pity (or any of those emotions per se), and I know my brain is scrambling and not working as it did, I AM STILL THE NATALIE OF BC.  
In essence I have propagated the problem to a degree by trying to maintain the “she’ll be right mate” bit, and doing the “faces” bit, and in the beginning that is how I coped.  Not so much for me, but to lessen the shock, anxiety and inability to come to terms with it from other people.
So what made this come about?  Why have I come back to Faces?
Well these last 18 months I have faces for family, friends, ex work colleagues, neighbours, peripheral acquaintances, etc etc etc.  

And also the unending answers to the QUESTIONS!!!  down pat.
People don’t greet you anymore as they used to.  I know they are to a degree uncomfortable with how to start the conversation, but the majority of people that I see and converse with are people I have known for nearly 40 years.  And technically it is not their fault.  BUT I find it very hard when each and every conversation and meeting up begins with “gee you look good”  “when will you finish treatment?”  or  “how much longer do you have to go on your treatment?” or the inevitable “my (insert any human) had cancer and they did this or that and now they are cured.”  or the one that gets up my nose – “don’t worry, fight the good fight and all will be well.”
it’s not their fault.  It is a problem with health professional, the community, and even we who have been diagnosed.
Why?  Because we don’t like certain words, we are not educated as to this level of disease on a broad enough basis, and we spend our time working around.
Where am I coming from here?  For me it was the confusion of the words.
Doctor – you have right lobular invasive breast cancer that has metastasised into your bones.

Surgeon – you have a few hot spots.  No operation for a mastectomy but we will put a portacath in.

Doctor – I want you to join the Advanced Breast Cancer Group to support you.
What the heck do people say when you say I have advanced breast cancer? I have metastasised breast cancer?  They have no idea.  I had no real knowledge.  The blurb is that there will be no deaths from breast cancer by 2030!  I applaud this but it doesn’t help us.  We need to EDUCATE people about this side of breast cancer.  Use the work Terminal, but the need is to educate for that as well.  The fact is we don’t have blood pouring out of us or limbs dropping off.  In a strange sort of way in most cases you look better than you did before until nearing the end.
EDUCATE!  so that we don’t have to do it ourselves.  Give it a word that is universal and spells out immediately what is going on! 
EDUCATE! The BCNA has done a fantastic job with their PR over 2030 but there are still 6 – 10% of women diagnosed with ABC.  
In their latest flyer (4 times a year) they stated at the state conference in South Australia after question time that they would LOOK into things regarding ABC.  
I have diverted (a lot) about where I am going with this but its is basically because I was at a funeral for a woman who has succumbed to the cancer.  The funeral was on a day when the heavens had opened in sorrow for her and the service was dominated by family and friends speaking about her, how she got on after the diagnosis, not who and what she was before it. And there is a lot of life before, not  after.  
I was really sad about that.

Natalie