16th Feb 2016
I have something very personal to share today.
My family and close friends already know but I have been struggling these last few weeks between the choice of laying myself open for everyone to see or keeping secret the terrible news I was given in November 2015.
Reading this, you would have guessed, that I choose the latter, this is a blog about me after all, so you will get to know some of the dusty bits today.
Sharing this scares me to the bone, but I am trusting that this is the right thing to do.
In November 2015 I visited my gastroenterologist doctor for a check up after a routine fundoplication operation in October for sever reflux.
What wasn’t routine was a strange mass of white dots that the Doctor found, “like nothing that he had ever seen before” so he took a biopsy and what came back with the results was a shocking diagnosis of WDPM.
WDPM is an extremely rare form of disease knows as Well Differentiated Papillary Mesothelioma WDPM (non asbestos related)
My Doctor was a kind man, sitting in a borrowed office, he choose not to use the word Cancer rather he said, “we have found a disease that is very rare”
My sample was also tested at Peter Mac who confirmed the diagnosis.
Searching online (which is very difficult because there is almost nothing available online for this disease) I was able to confirm with Doctor Google the shattering news that my disease was in fact Cancer, but not just any Cancer, one so rare that the chance of getting it would be one in 250 million!
I have started buying lottery tickets.
So I’ve got Cancer, I don’t feel any different today than I did yesterday when I didn’t know I had Cancer, it’s a crazy feeling, I kinda thought you would know you were sick if you had such a thing, I’m currently learning lot of new things at the moment, things I never thought I would ever need to know. I think my life is about to change drastically.
One of the reasons I am going public with my journey is because this Cancer is so rare, there just is not enough information about it anywhere, yet I know that there are about 50 people in the world who have had this Cancer.
I want to touch base with those people or their families, what treatment did you receive, was it successful, do you know of any trials for WDPM, where did you go to get treatment, can I talk to you?????
So many unanswered questions, my oncologist want to perform a very radical surgery, I think the consequences of such a surgery may be difficult to get over and I don’t want to go under the knife at the suggestion that it might fix the problem, I want to know what others have gone through.
I know this is a big ask, in Australia we have just hit a population of 24 million it would take 12 Australia’s to find one other person who has this disease, just to remind you it is
Well Differentiated Papillary Mesothelioma WDPM
(non asbestos related)
It’s important to note that my Cancer is Non Asbestos related, I have never been exposed to asbestos and there is no sign of asbestos in my body. No one knows how it started or why it started, or how long it has been there or how fast it grows, no one seems to know anything and I need your help to find someone who does.
I have so many decisions to make and it feels like I have no options because my Cancer is so rare.
This Cancer does not show up on any scans including a PET scan, but I assure you that it is there, my oncologist performed a laparoscopy just before Christmas (I got out of hospital Christmas Eve) he diagnosed that the WDPM was “extensive” and suggested immediate surgery.
Please, please spread the word to everyone you know, send a link of this page or my Facebook page; ask them to pass it onto their friends and for their friends to pass it onto their friends, hopefully I will be able to find even just one person who has been touched by this incredibly rare Cancer.
It’s a big ask I know, but I believe that we do not receive, because we do not ask, well I’m asking, BIG TIME, even if you don’t know me, please pass this onto your network of friends and ask them to pass it onto their friends, please help me to fight the fight of my life. x