Tuesday, November 11, 2014

Angry .....frustrated......I hate the word 'rare'

As I sit and think, I wonder if I should write this post.   It is not going to be a light, cheerful one that makes fun of the seriousness of cancer illness.   It is one that will be angry and frustrated.   I can't seem to get past these feelings, as hard as I try.

I am so angry!    I did exactly what I was suppose to do.   I learnt to listen to my body and forgo numerous tests in order that I  could have a 'normal' life in the midst of a cancer diagnoses.   I took care of myself, went for my regular check ups.   Agreed that it wasn't necessary to constantly  have scans, MRI, or even blood tests.    I lived my life.....somewhat naive I feel now.    On Wednesday when I went for my consultation I really didn't think I was going to have any great revelations to deal with.   I knew the drill.   I had a good handle on what was going on inside of me and had accepted that it was time to deal with the tumour.   Never, never in a million years did I expect to hear "it has invaded the bone".    Ovarian Cancer doesn't invade the bones.   Epithelial cancer barely invades tissue and organs, never mind the bone.    It is the one cancer that is different in this way than almost all others, its unique in that way - rare.   If it does attach itself to bowel, bladder, muscle etc, it is a very superficial invasion.   I have studied this disease, read the articles, investigated the medical findings.   Ovarian cancer is one of those cancers that although deadly , does not invade the bone.

Then why did mine?    It's so uncommon that the literature uses the expression "extremely rare", not rare but extremely rare.    I know that 'rare' is a word that has been used to describe me and my illness, but somehow this one missed me.   So when I heard this last week, I almost fell off my chair.   I know that I didn't retain much else of the meeting because my daughter kept correcting me on the way home about what had been said.    I was 'gob smacked' as one friend put it. 

I have gone online (not always a good thing) to read up on this new information, and it has been very hard to find anything written about it.    First I thought that I would look at the anatomy of the hip especially since biology was not my best subject.    That was interesting but not very helpful.   Then I decided to look up OVCA metastasis to bone.   Well I was able after a lot of digging to come across ONE article written in 2010 about two women from Asia who had bone metastasis.     The article did say that the prognosis in such a situation was POOR.    And both women died!!!!!     So that's a 100% mortality.     Now both these women also had multiple sites so I have one up on them....mine is only in one place.     Also, it seems that more research has taken place since 2010....another one for the expression "the longer you live with cancer, the longer you live".

I guess I am angry because I am going to that place of "what if".    What if I had surgery earlier would that have prevented this from happening.   Maybe, but who was even thinking about it.   I know I wasn't and my doctor wasn't.....I feel he was just as surprised as me.      So, I am angry but not at anyone, just at the fact that if it's rare it most probably will happen to me.    Now, I know I should probably go and buy a lottery ticket and see if this extends to other such rare occurrences the only thing is when I don't win I will be even more angry !!!!!!!

Well, I guess I will be angry for awhile.    And please, please don't tell me how lucky I am that they still want to try and get it.....I know that....but for the moment I just want to be angry and feel sorry for myself.   I won't let it be for long......but at least give me a moment to vent before I have to get back on my 'happy bus'.

1 comment:

Teamnanny Kath said...

Here for you.... you know that! Sorry I did not catch this entry sooner. Sending love and hugs...... xoxox