Two years ago today I received the results of my biopsy. They told me that I had a benign fibroadenoma and that this could easily be removed, nothing to worry about and bish bash bosh, I’d be back to my old self in no time. So much so my chirpy little entry on this site for 9 September 2009 reminded me that I had discussed renaming the procedure with my consultant to mallowectomy as it didn’t sound as harsh as lumpectomy!
Worst still the line:
“At least however we don’t have cancer in our family history and I’m just lumpy bumpy.”
I can’t tell you how often I replay that sentence in my head and how sad it makes me that I was just soooo damn wrong.
That was how I felt at the time. That was how my day was going. And that was (at that moment in time) how it was going to be, just a little blip. I think you can read the relief in my entry of knowing that I didn’t have cancer. But wow what a rollercoaster there was ahead of me.
Two years on, I’m ‘cancer-free’. That is to say the scans have told me that they got it all and there are no recurrences in the breast tissue. I can’t tell you any more than that. There is no real end date either. I know that may sound odd or strange but where there is clinical evidence or a precedent to follow then many cancers can get the 5 year ‘all clear’ or the at the end of this drug or that drug you will have beaten it. In my head however there isn’t an end date/time because nobody knows. If I sound like I’m dwelling in it, I’m not. Not at all. I’m cancer-free. But I find it terrifically hard when there’s a route or a pathway or a reference for other cancers and illnesses that determines an end or a route with markers on it. For something so rare, where there is no definitive ‘guide’, there are no answers. I may not be a scientist or mathematician but I like things to be solvable and there to be a reason and result. My favourite subjects at school (and subjects that I did well) were sciences, maths and even loved algebra! I think that’s where I struggle most… lack of reason and answers. Perhaps as more of us are diagnosed there will be more pressure for clinical trials, research, information and resources to be undertaken. As well as more data and reference points for ‘guides’ to be created. Perhaps my digging away at various different resources, speaking at cancer-related events, involvement in a number of different cancer networks, sarcoma groups, conferences and boards that maybe the word ‘Phyllodes’ will become a name that people start to think about…. perhaps. But I’d rather noone else had to join this exclusive group and be diagnosed!