Monday, 24 September 2012

Scan Results In

Today was the day I wished I had been able to work from home, the rain and wind both bad as I left the house.  It started an early day, dropping hubby's car off, work early then docs for my blood results.  I checked my scan was in but I wasn't able to get the results.  The nurse promised she would remind my GP.  I decided at lunchtime I would work from home and hopefully before I went to see the oncologist (I arranged to see him a couple of weeks back) I would know what the results were.
As I sat working away our Bear decided he wanted to sit out in the rain, 5 minutes after running around the garden he banged to come in, flew into the office to see me and shook, the water flew from him all over the computer, the papers on my desk, the walls, everywhere.  I had to pin him down so Hubby could towel him down.
I had no idea which part to hold as he was drenched!  I tried to work then the phone rang, my GP apologised and read out the results.  It wasn't what I wanted to hear but at least I know again that I know my body well.  The heart pains are the meso and over time, unless some kind of treatment works, they will get worse, to the point of obstructing the heart when it tries to pump.  I also have fluid trapped on the right side of the heart within the pericardium, this could be drained but only when critical.

So at 4pm in the pouring rain and strong winds we went to the hospital.  Our new oncologist was running late but we didn't mind, we knew what the scan said just needed it explaining more in a way we can understand.  The words Quality came up several times, hubby was really good as he kept putting across the fact that I want treatment and even if both him and my old oncologist don't really think I can tolerate Alimta again I am willing to give it a go.  Its over 5 years since it last poisoned my system and hopefully my body and immune system have forgotten what it is.  Although the hope to get on the ADAMs trial is foremost in my plan for the next treatment routine.  I asked about trying other chemo's but because they aren't proven or recognised for meso the answer is no.  In fact even challenging again isn't really acceptable, but why aren't they.  I hate the thought that this cancer can crush my heart, in more ways than one it seems! 
My window is now, lets hope I can get on this trial sooner rather than later, all I know is I need to try and stay as well as possible, any failing in health will rule out chemo altogether.  At least my oncologist says it straight and gives me it right between the eyes.  No gentle words or maybe's etc, 2 years max with treatment, he doesn't know me or my determination to stay alive.
My fellow meso warriors are fairing so differently, Lou has had bad news too, Steve is starting chemo again after 3 years of remission, Mavis has remained Stable, Stable is good but shame there was no shrinkage, especially after all she went through. 
I thought I was too young at 44 to die, I still think the same now even though I am now 52!  If I didn't have meso I would be so healthy, its so unfair but its something I can't change.  I just know those heart pains and what I went through from 07 to 09, every 10 weeks when they happened.  I sense my meso growing, it does it in spurts, maybe that is what makes me such an odd ball to others but it still doesn't help does it.  We were told again that the average life span is still one year from diagnosis, if that was suppose to make me feel better it didn't, no one should die, we didn't do anything to deserve this but we can't change the past.  I hope those who are new to this battle help find a cure and hopefully in time to save many of the people I have come to know, respect and love throughout my own meso journey.
On such a note I am close tonight and thank God that I am still here.

1 comment:

amanda said...

Hi Jan,
sorry about the meso news, although as you say shows you know your body. This means you are the best person to decide re treatment - four years is a good gap since the last, who is to say another course won't give you another 4 years - and time for that cure to be developed.

And you'r right the doctor doesn't know you or your determination- fingers crossed for the Adams trial.