One day at a time...

"There are lies, damned lies and statistics"





Mark Twain (thought to derive from Benjamin Disraeli)


Well it was chemo clinic today and as always it was eventful. Firstly my nurse asked me if I wanted to have a chat with my oncologist regarding my complaint about my care following my initial treatment. I already outlined my response to this complaint and suffice to say that I was not satisfied with it (polite way of putting it). I have subsequently contacted the complaints department and stated that I would like to take my case further. The complaints department therefore formally offered me an appointment to sit down and discuss my concerns with someone. They also let my oncologist know about this, I assume, hence her invitation to talk  to her. I will say again that my oncologist has been nothing but professional these last 2 years and my issues lie elsewhere. I have decided to take up the offer of meeting with someone at the complaints department as this is hopefully another step in the direction of addressing my concerns head on and hopefully preventing someone else from going through my experience. I will update the blog accordingly.

This incident once again coincided with another happening today. Someone told me that my friend Janette had appeared upset after her meeting downstairs with the Oncologist. I was concerned for her. When I saw her she told me that the doctor had said to her that it was likely that when she finished chemo the cancer would return(or start growing again) within six months to a year. Janette is in exactly the same boat ( a very fucking leaky one) as me, she is triple negative with metastatic tumours. I therefore felt her devastation. I have not personally had those words spoken to me but perhaps they have been said in other ways. It certainly goes a long way to explaining why they are keeping me on it. I wasn't shocked lets say that, but as Janette pointed out hearing these words out loud is hard to take. The chemo leaves most people wrecked and praying for the end of the 18 week regime. To be told that it has such a short window of remission is to say the least disheartening. This is the harsh reality of triple negative breast cancer and it also reinforces the notion that women should get all of the facts about their cancer and demand to be heard when they feel that something is not right. Therefore coming straight on the back of my chat with my nurse it strengthened my determination to keep going with my complaint, things happen for a reason it would seem. So I came home today and after my initial chemo induced coma, I got straight online looking to arm myself with a little power through knowledge. I found a mixture of information. The one that stood out was on an information website on this type of cancer and the prognosis. It stated that "the median life expectancy for women with triple negative metastatic breast cancer is one year". Well I have outlived this statistic already. I choose not to believe statistics as I am an individual. I am me. I have a very positive attitude these days and my journey will be as individual as I am. As a Modern Studies teacher I spent many a lesson explaining to my pupils to be very wary of statistics. I am practising what I preached. I wanted to post some statements from women on various forums who are aboard the seemingly sinking ship.

" I feel as though I am living on borrowed time"
" I hate this evil, clever cancer"
"Every time I look up anything on triple negative cancer it fills me with gloom about how aggressive and  difficult to treat it is"
"The trip neg is a stinker...sneaky, unknown, and criminal.
"On July 24, 2007 I was declared NED. On Aug 15 (my 41st b-day) I had a local recurrence...on Aug 24, I was told the cancer has spread to my bones and liver.I really can't understand how all this could happen in a month...total elation, to total devastation."
"I am triple negative and I  have no intention of  only living for 12 months"

I choose to go with the last statement. Statistics shamistics. I also looked up various sites on new developments on TNBC. There are many. It is encouraging and it gives me hope. Every day is a new day in the cancer research world and this particular type of cancer has been recognised recently for what it is; deadly and hard to understand and under researched. For this reason I believe that new research will overcome this. I am hopeful that Janette and I will share many more chats at clinic when the time comes for us to go onto a new chemo. In the meantime I have to live in the day. One day at a time and all that. Here's to that Janette.